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Hanging with Henry |
Sunday, March 02, 2003
I have struggled with making my letter writing to Henry public. I have realized that my grief is less private now, so here goes. Click on this link to read the letters that I write almost daily at
Dear Henry. 
Click on this link to be taken to that site. Thanks for thinking of Henry and being friends to us. Allen Saturday, January 11, 2003
Today marks the completion of first 30 day period of mourning, or Shloshim. Yesterday, Henry's school held a ceremony to mark this milestone and celebrate Henry's life.
 Henry's classmates read a list of things they learned from Henry:  Henry taught us how to be best friends. Henry taught us about nature. We learned to LOVE super heroes. We learned to love brothers and sisters. We learned not to complain. He taught us how to always be sweet. Henry taught us all about whales during our ocean life study. We learned how to be kind to each other. Henry taught us many short vowel words. We learned to smile a lot! We learned to take a good nap when we need one (my favorite). Henry's best friend, Ari, prepared these words: 
Henry was my special friend who I played with many times. He taught me many things in life like how to smile and to be brave. Henry was my best friend who I knew for five years. When Henry passed away I was very sad but I still remember Henry and never will forget what a cool person he was. A few songs were sung, and my favorite was Mi Ha'ish (psalm 134) Me ha-ish hefafetz chayim, Ohev yamim lirot tov Who is the one who desires life, loving their days, doing good? N’tzor l’shoncha marah, guard your tongue from evil Us’ftecha d’daber mirma, and your lips from speaking falsehood. Sur marah, v’aseh tov, Depart from evil and do good; Bakesh shalom v’rodfayhu, Seek peace and pursue it. When we sing this on the High Holidays I love the melody but always seem to focus on the don't gossip or tell untruths part. It was only yesterday that the beautiful melody and the "Who is the one who desires life, loving their days, doing good?" and "...do good, Seek Peace and pursue it" parts came together for me in the image of Henry. Many of the rememberances centered on Henry's smile.  and how nice and outgoing he was   For the past few weeks I have left this alone and been writing letters to Henry, sometimes 3 or 4 a day. I went back through them the other day and I think it is okay to copy a few short excerpts from them here. I chopped things up a bit so it might not really flow too well. Most of the letters are spent telling Henry how much I love him and miss him. It is unbelievable how many different ways I can write that. Tuesday, January 07, 2003 Dear Henry: Another person at the conference Mommy went to (Laurie was a participant this past week in a conference sponsored by the Johns Hopkins Genetics and Public Policy Center and was on a panel with Leon Kass, the Chairman of the President's Commission on Bioethics) was a rabbi. His name is Rabbi Gerald Wolpe. He told me that he said a mishaberach for you when you were sick. He heard about you when we did the bone marrow donor drives a few years ago. His son is a rabbi too. His name is Rabbi David Wolpe and he writes books. As it happens, Mom bought me one of his books called "Making Loss Matter." It is really interesting and helpful. Here is something he wrote. The times when we feel utterly defeated are the moments when we have the chance to see farther, to reach down deeper into ourselves, to acquire wisdom. It is the time to begin dreaming wise dreams. In another part of the book he writes, Superheroes of children's comic books are projections of the child's imagining the power to change the world. Monday, January 06, 2003 Dear Henry: Sorry I haven't written but I have been helping Mom with something she was writing on the computer. She wrote a presentation to make to a bunch of really important people today. She talked about what we did to try to have another baby that had healthy blood to give to you. We want to make sure other families get a chance to do what we did and hopefully it will work for them. It was nice and hard to see our friend Sharon who was here for the same meeting. Sharon came here from Tel Aviv. You probably remember when we saw Sharon in New York with her husband Yavin and their little boy Amitai. He had the same problem with his blood that you had. Sharon -- you say "Shah-rown" the way you say the Hebrew words you learned in school -- had a baby with the help of Mark and Dr. Rosenwaks and her name is Alma. Doctors in Israel gave Amitai some of Alma's blood the same way you got your new blood in Minnesota from Beverly, your wonderful donor. It looks like Amitai is going to be okay and not have any of the problems you had. When Sharon spoke today to the doctors, she said that Henry Strongin Goldberg saved Amitai's life. You did. That is the best thing that any person can do. Saving someone's life and loving people are the greatest things we can ever do and you did both. I am proud of you. We will go visit Sharon and her family in Israel some time. I am sorry that you never saw Jerusalem. It is so beautiful. Yavin and Sharon planted a small grove of trees on a hill overlooking Jerusalem in your honor. I want to show you an email that Mom and I got from one of the teachers who helped in Aunt Tracey's class. Dear Laurie and Allen. Dec.31, 2002 My name is Elizabeth Aloni, teacher at Gan Ha Yeled at Adas Israel (the Chicks class). Last year, in a shabbat class celebration Henry came over as a special guest for Sam Strongin's. That was a very special day for all of us, the little ones were observing all Henry's motions and inputs. Anyway G-d bless his memory. What I want to tell you is that on that day, when we passed the Tzedakah box to collect pennies for charity, Henry said "this is very important, we should give this money to the poor children in Africa or Afganistan...." That was very sweet of you. You always thought of others (starting with me, Mom, Jack and Joe) and that was really nice and really grown up of you. Saturday, January 04, 2003 Dear Henry: Sometimes when I read or type things said by someone else I can hear the other person's voice. So I am going to give it a try now with us. I pray it works. Goodnight Henry. I love you all the way to Uranus and back. Very funny. Goodnight Dad. I love your butt, too. You know, that worked. I love you Big Man. You are rock solid. Dad Saturday, January 04, 2003 Dear Henry: We saw your teachers when we went to celebrate Jack's birthday at school. Mrs. Berliant and Mrs. Newman and G'veret Epstein miss you so much. I think you were their favorite student. Most parents think this about their kids, that they're the most special and everything, but I think it is really the truth with you. I think you were the favorite patient, favorite student, favorite kid, favorite friend, favorite customer, favorite shopper, favorite nephew, grandkid, everything. Believe it, Henry, believe it. I drove down Canal Road yesterday and now whenever I drive on it -- which is a lot -- I can't help but think about the time this summer when you almost died. I drove 90 miles an hour down that road when Mom called me and told me that you were either dead or dying. I couldn't believe it. I needed to make sure that I got to the hospital in time to say goodbye to you. You recovered so fast that I knew you were indestructible and would live forever. Remember how I told you that you were now "Harry Potter, The Boy Who Lived." Just like Harry, your mother's love saved you from death. How could anything have been more powerful than that love.  I just saw your bike is in the garage. I am crying now thinking about how lonely it is without you atop. Papa Teddy bought one for you and one for Jack. You were doing so great. This is the spring when you'd finally take off the training wheels. This is the summer when you'd finally swim well all by yourself. You just never had the time to master all of basics of boyhood. We were so close. You know how lonely I am without you. I keep listening to this song called "Private Universe." I think you and I lived in one together. I love you. Our private universe is a lonely place without you.  Love, Love, Love, Love, Love, Love XXXXXXXXXXXOOOOOOOOOOOOOOO Dad Saturday, December 28, 2002 Dear Henry: It is Jack's birthday today. We all went to the zoo. It made me remember when you and I went to the aquarium at the Mall of America. Remember the baby turtles. They were really cute. You loved cute things, and you were such a cute thing. Unfortunately the Kirby DVD and game came the day you died. Jack is playing with it now and really enjoys it. Yesterday mom took Jack skiing for his birthday. He went with Nick and Jeffrey and Shelley. They all had fun. It was the kind of day that normally I would have spent with you at home cuddling on the couch, watching movies, being lazy, while Jack and mom were out being active and getting cold. Everything I do or don't do reminds me of you. This is a good thing. I can't wait to think about you today. The guy at Palisades Pizzeria asked about you today. He was very sad when I told him what happened. Everyone loved you so much. I didn't even know the guy knew you or your name. You made a great impression with everyone who ever met you. I think about you all day and night and wish I could hold you, kiss you, watch you laugh and hear your voice. I don't want any more time to pass since the days we last spent together. I am afraid of losing the clarity of my memories of you. I have so much to tell you. Tomorrow is Darrell Green's last football game. He is retiring from playing football with the Redskins the same way that Cal Ripken stopped playing baseball with the Orioles. Michael Jordan is still playing basketball with the Wizards but he has said that he will not play anymore after this season. You got to see a lot of great professional athletes play. I remember getting you out of bed to watch Mark McGuire break Roger Maris' homerun record. And who could forget the time you spent with Cal in the dugout talking Pokemon or when you took batting practice behind A-Rod on the Metrodome field. I am sorry we didn't get to go to a Wizards game or a Redskins game. The other day Mom and I went and bought some licorice in Georgetown. You might remember that you and I used to do that often for mom before going to the clinic. We stopped into one store and we ran into your camp counselor. She was very sad, and said she loved you a lot. Who didn't. Then we drove over to the clinic. When we got to the hospital we saw Dr. Abu Ghoush. We gave her some of your old Peptamen Jr. and other supplies. We are going to give them the blood pressure machine too. Hopefully another family will be able to use it. I threw all of your pills down the drain the other day. You would have loved that. It was kinda like when you dumped all of your CSA or whatever it was down the drain that time on the road to Minnesota. Sorry that we couldn't have gotten rid of those pills sooner. I know it was no fun for you. Mom also gave the clinic your yellow toolbox, which she filled with all different sorts of bandaids. Dude, they have these new Star Wars bandaids that you'd love. The package is really cool; it has a hologram or something like that on it. We are going to make sure the toolbox is always stocked with good bandaids so the kids at the clinic have fun choices. You were the world's greatest bandaid lover. Speaking of boxes, Jack made a memory box where he put some of your favorite things. It will help him think of you. He misses you so much. I bought Stuart Little 2 to watch with him, but he really wasn't interested. It was more your kind of movie and I was sad that I couldn't watch it with you. Maybe we can read these letters to you out at the cemetery or something. I look forward to visiting you out there. I hope you're not cold or lonely. I wish I could keep you warm and safe. Maybe we can watch Stuart Little 2 together. I'll charge your DVD player. All of my love forever. Dad Friday, December 27, 2002
'Brave and hopeful and strong' District child loses battle against genetic disease by Debra Rubin Mommy, this is a very bad last night of Chanuka." Those were the last words Henry Strongin Goldberg said before being put on a ventilator. And his last words ever. Just days later, on Dec. 11, Henry lost his battle with Fanconi anemia, a rare genetic disease, dying from complications of a bone marrow transplant. He was 7. A District resident, he had spent nearly the last six weeks of his young life at Fairview-University Medical Center in Minneapolis. It was at that hospital that he had had the bone marrow transplant 2 1/2 years ago, a procedure that his parents, Laurie Strongin and Allen Goldberg, had hoped would allow their son to live. He was an "amazing" child, said Strongin, in good spirits -- despite a life of blood tests, surgeries, transfusions and chemotherapy. Until the last two weeks of his life, "he was indomitable," said his mom, "just brave and hopeful and strong." He loved Superman, Batman, Pokeman and Disney World, and had attended kindergarten last year at the Jewish Primary Day School in Silver Spring. This year, he began first grade at the school, but then as his health declined, he switched to home schooling. Earlier, he had attended the Gan Hayeled at Adas Israel Congregation in the District, where his family holds membership. His brother, Jack, was born in late 1996. His parents had hoped he would be a genetic bone marrow match for Henry. He wasn't, but became his big brother's companion. Strongin and Goldberg decided to try in-vitro fertilization, trying to produce an embryo that would develop into a child with a perfect genetic match. They gave up after nine failed attempts at pregnancy, and were featured in a July 2001 New York Times Magazine article about the controversial procedure and the medical journey they were taking with their son. Henry was also featured on Nightline. The family sought an unrelated marrow donor. In April 2000, WJW featured an article about Henry and bone marrow testing drives being held locally in hopes of finding a donor. In July 2000, he had the transplant. "We tried everything we could," said his mom. "We don't have any regrets." Somehow, she said, "we were able to enjoy every minute of every day. While we didn't take it for granted that we were going to have a long life together, at the same time, we didn't really believe Henry would ever die." Meanwhile, 14 months ago, the couple had a third son, Joe, conceived, as Strongin said, "the good old-fashioned way." Joseph's genetic make-up did not match Henry's, but he and Jack are matches for one another. "They'd better not need it in my lifetime," said their mother. She and her husband hope to set up a foundation in Henry's name that will do research on Fanconi anemia. Meanwhile, they ask that contributions be sent to the Fanconi Anemia Research Fund, 1801 Willamette St., Suite 200, Eugene, OR 97401. Survivors also include Henry's grandparents, Ted Goldberg of Rockville and Pat and Sy Strongin of the District. In a eulogy that Laurie Strongin wrote for her son, she said, "Before he could even smile or talk, Henry taught me what was important and what just didn't matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility." -------------------------------------------------------------------------------- Copyright 2002, Washington Jewish Week 1500 East Jefferson St. Rockville, MD 20852 (301) 230-2222 Wednesday, December 18, 2002
 laurie and i went to henry and jack's school yesterday. jack acted like he always does when we bring him to school. he just jumped in without even a "goodbye" to mom and dad. then laurie and i visited henry's classroom. his desk has his name on it and all of his stuff still inside. it is very lonely. the school is going to ceremoniously remove the desk after the first 30 day mourning period to give the kids closure. inside henry's desk was a drawing that he made for bella. he had written her name and his. on henry's birthday, his present was to go to the patagonia store in georgetown and pick out some things to keep him warm. henry just loved the hat, vest and coat he picked out and wore them all the time. i mean all the time. i even bought him long underwear and he took to wearing the top and bottoms as clothes. every day. from his birthday in october to the time he went to the hospital in minnesota he was either naked or wearing the patagonia long underwear. for the last night of hannukah i bought him a new long underwear top with a zipper at REI. he kept asking me how come i had tops with zippers and he didn't. a hint, perhaps. laurie was staying at the hospital that night so i gave the top to her to give to henry. laurie said that henry was so excited when she gave it to him. he told her to touch the fabric because it was so soft. i was fortunate enough to see him in the top that next morning when he went into septic shock. they removed it just before he was intubated.  on henry's birthday he was in isolation at our house because his immune system was so suppressed. friends of nana pat decided they would hire a magician to entertain henry and jack. this was henry's birthday party. he was too busy having fun to feel sorry for himself that he couldn't have friends come over. i think the smiles speak for themselves.    tonight is the last night of shiva at our house. in silence tomorrow laurie and i will blow out the candle that has burned for 7 days. we then go for a walk around the block to mark our return to the community. around the block where henry rode his bike. around the block where henry first felt snow. around the block that carried us so many nights to max's ice cream. i am going to have to learn to walk without him. Tuesday, December 17, 2002
today or tomorrow laurie is planning to send out an email to our email list asking anyone who has something to share -- henry story, funny anecdote, whatever -- to email them to us. laurie's email is lstrongin@starpower.net and mine is allengoldberg@starpower.net .
i went out to our minivan for the first time since getting back and found a treasure trove of henry's tchotckes stuffed in the pocket behind the front passenger seat. it reminded me of a whole bunch of things that henry loves. thank goodness he was such a pack rat. i think i'll be making discoveries of henry's treasures for months to come. normally, i couldn't/wouldn't step out of our house and away from henry without my cell phone. i lost it in the confusion of our return from minneapolis last week and i'm in no particular hurry to hunt it down. we're now taking jack to his and henry's school in a little visit. we are just going over to say "hello." i don't know how this will affect jack. i think it is going to be great for jack to see his friends and equally hard for laurie and me to see henry's classmates and teachers. jack appears pretty okay by day, his usual ebullience is just slightly deflated. a lot of jack's friends come over to visit, and has been going out for fun times with friends and family and their kids. it is at night when jack has the most trouble. this former king of snoozing two seconds after tuck-in has found that he cannot get to sleep. to help him fall asleep we've had he come in bed with us and another night laurie snuggled with him until they fell asleep together in the top bunk of the bunk bed that henry and he shared. here is a photo that i just took of jack with his lego creations of the past few days. laurie and i have been giving him his birthday presents without waiting until his real birthday. he was afraid that he was going to have to celebrate his birthday in minnesota.  Rabbi Justin David Congregation B'nai Israel Northhampton, MA Remarks at Henry's Funeral Friday, December 13, 2002 Laurie, Allen, Jack, Pat, Sy, Ted, Abby, Andrew, Andy, Tracy, Jennifer, Dan, what is there to say? So much has already been so eloquently expressed by you, Laurie and Allen, through your e-mails, through your editorials, through your boundless acts of strength and compassion, and, most of all, by the rich, courageous, vibrant life of Henry Strongin Goldberg. In a sense, what is incumbent upon all of us to convey to you is quite simple - that we love you, that you are not alone, that Henry’s life and your life is testament to a source of compassion and strength that exists outside of us and through us simultaneously. After your loss, our loss of Henry, our task is to attend to those regions of the mind and heart where Henry continues to live. Our scriptures teach us, that the human soul is the candle of God. Just as divine energy, divine love, divine compassion reign eternal, symbolized for us in the eternal light in every synagogue, so that bit of love, compassion, that spark that animates us, lives on. Our task now, is to reflect on Henry’s remarkable life, and to sense Henry’s continuing presence, like a candle whose flame appears to be extinguished, but whose light continues to give off warmth and radiance. Henry was a light to all of us - to those of us who were involved in the intimate details of his day to day care, to those of us who are his family, to those of us who are intimates of Laurie and Allen, to his teachers, friends, parents of friends, members of this community, of work community - anyone who was touched by the life of Henry Strongin Goldberg. Henry warmed us with his courage. He inspired us with his strength. He delighted us with his spirit. Henry imparted the life that comes with hope - in just his being a kid and partaking of the pleasures of childhood. It was Shelley Remer who first told me about Henry. Fighting back the tears, Shelley told me about the little boy in Elaine Berman’s class who would most likely have to have a bone marrow transplant. Shelley told me that I could pick him out immediately, because he was always wearing a Batman costume. And she was right. There was Henry, the first time I met him, eagerly and purposefully putting away blocks, wearing his Batman costume. I introduced myself to the kids in the class, whereupon Henry looked me right in the eye, pointed at me, and said, “You’re Mr. Ratburn,” a character from Arthur. As a parent, you learn to see the world through your child’s eyes based on how he or she plays. And even from this first glimpse, without all of Laurie and Allen’s reminders of how much Henry loved Pokemon, and superheros, it was clear that Henry saw the world as a place to embrace and to explore. There are two stories that Laurie and Allen shared with me last night that I feel particularly compelled to share with you as a rabbi, because they exemplify the love and compassion that was so present in Henry’s life, and that can imprint Henry’s lasting presence upon our hearts. Many of you know of the love Henry had for his Sunflower teacher, Liani, and in particular, for her daughter, Bella. This summer, Bella was in a ballet performance, and Henry had to be there. The day of Bella’s performance, Henry woke up, cast aside his usual kid clothes for a pair of khaki pants, a yellow button down shirt and a blue blazer, came downstairs, and sat, all dressed, for two hours, until it was time to go to the performance. At one point, Laurie said, “It’s time to go,” And Henry said, “Wait. I have to get her flowers.” And to hear Laurie tell it, Henry sat transfixed throughout her performance, as if Henry was watching the love of his life. Many people remarked how Henry was a help to younger siblings. It was approximately a little over two years ago, at the time that Henry was about to return after his transplant, that a family at the Gan here at Adas Israel suffered a terrible tragedy, when a man died suddenly, leaving his wife and two small children. Simon, one of the children, had the blessing of being one of Henry’s closest friends. Henry said to Allen and Laurie, “I want to make him feel better. I want to talk to him about his daddy.” And so, at a time of fragile recovery, when the world had closed in on Henry and was slowly opening back up, Henry called his friend. If only we could embrace each opportunity for living so completely, that we could express our love so simply and so spontaneously. To the extent that each of us strives to live with great er compassion and tenderness, we embrace Henry’s living presence in us. Our tradition is wise in recognizing the profound degree to which we absorb the influences of parents and all who care for us. Henry’s love, his wisdom, his joy, his vitality were uniquely his, but they were also learned, and so in remembering Henry, we have to remind ourselves of the extraordinary accomplishment s of Laurie, Allen, Jack, family, Pat, whose constant presence and energy defy description. Laurie and Allen, you recalled to me last night, with great admiration, how Henry endured what he had to endure with steadfastness, never complaining, even though he had every right to moan until the end of time. I think I speak for everybody here when I reflect on how remarkable it is that, through disappointment, pain and great darkness, not once did you ever show any bitterness. We would love you all the same if you had, but the two of you must have made a remarkable internal decision that you were going to greet every challenge with a sense of purpose, with love and compassion, and with hope. For 7 years, you lived a life of no limits, because your love for Henry was boundless, and so your efforts to keep him alive were boundless. Jack, I hope that you feel proud, that you loved and will always love your big brother, who loved and will always love you. Henry loved you, Jack, simply because you were his brother, his best friend given to him by your parents, because your kind and considerate toward him, because you played with him and watched TV with him. The greatest thing any of us could ask for is a best, best buddy. When we grow up, that best, best buddy might be our husband or wife, friend, but when we are kids, that best buddy should be our brother. And Jack, you were Henry’s best buddy, the greatest thing he could ask for. In my synagogue in Northampton, MA, we have a pamphlet titled, “Do Jews believe in the soul’s survival?” For me, having been blessed to know Henry Strongin Goldberg, the answer is undeniably clear. In all the concentric circles of relationship, love, support, that existed and blossomed around Henry Strongin Goldberg for 7 years, Henry’s flame, God’s little candle of vibrant intensity, illumines our lives. Any child who benefits from new treatments to fight FA will do so because of the fight Henry made. Any physician or researcher motivated to explore the lastest therapy will do so because of Henry’s brave example. Already, Laurie and Allen can tell you about children who have benefitted from Henry’s example. Henry will live on in the heart of every child who will be inspired by Henry’s life, directly or indirectly, to live more sweetly - with more vigor, compassion and imagination. Henry will always be alive for we who regarded him with love and admiration. And, Laurie, Allen, Jack, for 7 years your lives have been Henry’s life, so intricately intertwined. God’s candle that was given to you for too short a time has already ignited additional flames within you that nothing can extinguish. It is our tradition to bestow these humble words upon mourners - Ha-Makom yinachem. Rabbi Harold Kushner struggles with what these words mean in the face of tragedies such as yours. Instead, he looks for comfort in the following questions: How do we respond? What do we intend to do? Are we capable of loving, in a world that has disappointed us? With all of its imperfections, are we capable of loving a world, because it does bestow its measure of beauty and goodness? And can we love ourselves and the people around us, even though none of us is as strong as we would like to be? May these questions be the beginning of some solace and healing. Ha makom yinachem - may the love of all of us here, and those not here, of family, friends, teachers, doctors, children, admirerers, lifetime friends of Henry, give you a glimplse of the ultimate love, that brings true comfort. Y’hi zichro baruch - may Henry’s memory be an eternal blessing for all of us.
Henry's grandmother, "Nana Pat," a.k.a. Laurie's mom, wrote this and read it last night at the Shiva.
Henry Strongin Goldberg’s Tale A fable for all time – a tale of love, courage, determination, life, compassion, respect, laughter and love Born of love, a life of love, and a memory of love A lifetime lived in only seven years, one month, two weeks, and two days Oh, too short, but filled with zest, fun, the love of many, happiness, adventures, - as a friend of ours said, a life filled with more experiences than many centenarians can count Henry taught those of us, including so many in this room, the value of love, truth, courage, ability to adapt, and fun Recently, I had the good fortune to take Henry and Jack to see the most recent Star Wars movie. When Henry came home and was asked what he liked most about the movie, he told Laurie that Yoda was his favorite, because he was small, fast and wise. Just like Henry, Climbing trees, exploring the secret passage, playing hide and seek. Playing with his beloved aunts and uncles and cousins. Henry was so fortunate, he even had two uncle stinkies or actually one Uncle Stinky and one Uncle Poopy. Winning at chess – he even beat Uncle Peter, who Henry suggested needed more practice – winning at endless games of war, teaching Jack the ways of the world, wrestling with Jack like they were Siamese twins, finally mastering a running somersault on the beach, driving the tractor at St. Michaels with Papa Sy, spelling Papa Sy’s name at the family Chanukah party, catching his first fish, taking responsibility for flushing his lines and giving himself his medication, sitting in that chair as he was wheeled in for his radiation treatment and singing songs, being with Grandma Phyllis and Papa Teddy, patting Joe Joe on the head with so much love – paddling the kayak, listening to stories (not encyclopedic facts like Jack liked), climbing trees, repelling rock walls with Debbie Blum, doing Tae Kwan Do, reciting all the lines from his favorite movies, laughing at his favorite parts over and over, loving Bella, going to Disney World, and loving his mommy and daddy, and Jack and Joe. But at the root of this Superhero was Henry’s good fortune to be born to Laurie and Allen, who with their endless bravery, respect for Henry and his life, love, devotion, advocacy for Henry, hope for Henry, fun-loving spirits, souls and willingness to share Henry with all his family, friends and the world . When Henry was born, Sy and I determined to celebrate every day of his life. I was especially lucky to have been given the gift to walk the road with Laurie, Allen, Henry, Jack and Joe – the greatest gift Laurie and Allen could have given me. There is a traditional Hebrew blessing Zichrono liveracha – His memory will be a blessing. The Goldberg Strongin family thank you for being here, for your love and for sustaining Laurie and Allen, Henry, Jack, and Joe through Henry’s journey. Thank you for sharing Henry with us. Donations to the Fanconi Anemia Research Fund The family is planning to establish a foundation or fund to honor Henry and to share his life force with the world So Dance with Henry, sing his song and go out in the world doing good, making people’s lives better and Henry will live through all of us. Sunday, December 15, 2002
lemonade stands
rocks anything "rare" his teachers uno, skip bo & blink chess his portable dvd player monkey bars rainforest cafe joseph and the amazing technicolor dreamcoat sunglasses "his" green chair urinals nana pat's mustang convertible the beetle car fishing with papa sy making telephone calls tae kwon do with anthony, vj & mr. kim pee wee herman lady and the tramp 2 the gap his orioles wallet the secret campground sea kayaking with me Saturday, December 14, 2002
michael jordan
shooting baskets in the basement t-ball nikes hot tubs st. michaels elaine juan dixon rootbeer and bubble gum "flavored" anesthesia schoolhouse rock eskimo and butterfly kisses
more of his favorite stuff:
beanie babies bandaids floating in hot baths with a lit candle and the lights off soft pretzels pringles slurpees m&m's (plain, not peanut) orange sherbert his new blue bathrobe swords writing his name writing notes to Laurie and Bella
Laurie's Eulogy
On October 25, 1995, Henry made me a mom and a better person. Before he could even smile or talk, Henry taught me what was important and what just didn’t matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility. And together as a family we have done just that, packing more smile and laugh-producing times together in seven years than many do in a lifetime. We have lived and loved as though we could one day lose Henry while simultaneously pushing love and science to their limit to ensure that we would have him in our lives forever. Henry has driven a tractor, fallen in love, danced with 10 women at one time, and laughed until he fell over. Just two days ago, Henry finally got the biggest, baddest Swiss Army knife which he held onto til the very end. We have lived every day with Henry to its fullest. We have had ice cream for dinner; transitioned from the hospital to running a lemonade stand in a matter of minutes; gone to Cactus Cantina seven nights a week; acquired every single Pokemon figure made. At last count we had 188. He met President Clinton, Cal Ripken, Batman, the entire Minnesota Twins, and more significantly, they got to meet him. We did all those things because at that moment in time we could and because, though we always hoped things would get better, we knew enough to go when the going was good. Just in case. As I’m sure all of you know, Henry just made everything better. He was wise well beyond his years and he was so much fun. It’s almost as if all the good things in life were created with Henry in mind. No one had greater appreciation for Disneyworld, Funland, Sullivans or any of the other fun things in life than Henry. He was a great lover of music and could sing “Brick House” and dance with the best of them. I will cherish my memories of Allen and Henry dancing together in our home. It is such a privilege to be Henry’s mother and am thankful every day that Allen and I found one another and created such a wonderful, love-filled family. It’s no surprise that Henry has had an ongoing fascination with superheroes. He put on a Batman costume for Halloween when he was two and didn’t take it off until we left for Minnesota 2 ½ years later. Henry didn’t need it anymore since he had received sufficient training and at that point he had achieved superhero status in his own right. As my brother Andrew said, Batman should wear a Henry shirt. My dad used to tell me that a day without me was a day without sunshine. Now I know what he was talking about. Sweetie, you are everything enjoyable in life. You are a lemonade stand on a hot summer day. You are the first piece in a box of Godiva chocolate; kite flying on the beach; the final encore at a Springsteen show; smores at a campfire; a piñata at a birthday party; fireworks on the 4th of July; a ride on a ferris wheel; the glow of candlelight during a thunder storm; finding a sand dollar on the beach; penny candy; class outside; the last ski run of the day; meeting your child for the first time. The loss of you drenches my heart in sorrow. One nightfall, the evening before we left for Henry’s transplant, Henry and Jack were taken by the magic of fireflies and started to run around our yard, catching one after another. Each catch was a victory and was met with curiosity and excitement. Some of those bugs sacrificed their lives at the clumsy, but curious hands of these three and four-year-old boys. I watched and let myself feel what it’s like to be a kid, filled with curiosity and wonder about the world. At some point I noticed that Henry had disappeared, so I went inside to see what had become of him. I went upstairs and slowly opened his bedroom door and heard a whisper telling me to come in quick and to shut the door. I found Henry lying on his back watching the fireflies, which he had brought upstairs one-by-one and set free, light up his room. I’m not sure how Cactus Cantina or Max’s Ice Cream will survive without you and I sure wish that Daddy, Jack, Joe and I didn’t have to. I miss you so, so much already honey. Our job now is to ensure that everything is better because of you. So, like you, we will draw our swords, but don’t expect the same resiliency. You set the bar high. Give us a while and we will make you proud, my son. So today we say farewell to your body and every day from now on we will cherish your soul and spirit for they live within us now. Goodbye Henry. Friday, December 13, 2002
i just got dressed. i haven't worn a suit much in the past few years. i bought this knowing i'd need it for my mom's funeral. i took a look in the mirror and i look like a little boy in a man's suit. josh baskin at the end of big. henry would insist on wearing a sports jacket for his dates with his girlfriend bella.
 i turn 40 next week. i have made the same exact wish for the past 7 years when i blew out the candles. i need to keep updating the list of henry's favorite things, but now it is for me. he really like balls, and super balls, in particular. he loved baseball bats and had quite a collection of every size. he loved riding carousels and we rode them from martha's vineyard to central park to glen echo. and he was a connoisseur of things Digimon. it is really smokey out today.  I don't know if anyone is still reading this but after the funeral I'll post the eulogy Laurie wrote. She is an amazing mother, a beautiful writer and the true love of Henry's life. My best friend Bill will read a letter that Henry's doctor, John Wagner, wrote that moves me to tears just thinking about. I think some other people might say something and I'll try to post whatever is appropriate. Thanks for caring about Henry, Jack and Joe. 
I've been fortunate over the past year to have emailed back and forth with Cindy Bullens, an incredibly talented (though woefully underappreciated) artist who lost her daughter, Jessie Bullens-Crewe, to Hodgkin's disease at age 11 in 1996. Cindy is kind enough to go around the country and play fundraising benefits for families like ours, in addition to her normal touring schedule. Cindy's album, Somewhere Between Heaven and Earth, does two important things (for me, that is) it captures a parent's grief and it rocks, or should I say, RAWKS!, dude. Her lyrics and music transcend the treacly pap I fear dominates a lot of the grief and mourning space. I would recommend her music to anyone (not just those mourning the loss of a child), particularly this album and her newest, Neverland, which features a stellar supporting cast of Steve Earle, Emmylou Harris and Benmont Tench. I think Cindy's music is going to help Laurie and me a lot. One of Laurie's favorite movies of all-time is Grease, and I think it bodes well that Cindy wrote and performed a lot of the music for the film's soundtrack.
I've got this cranked, very loud, right now. Thanks Cindy. Better Than I've Ever Been …(People say) that I'll never be the same That's true-no doubt But I know more now what life is about I laugh louder Cry harder Take less time to make up my mind and I Think smarter Go slower I know what I want And what I don't I'll be better than I've ever been Maybe I'll be better than I've ever been… There's a curious freedom Rising up from the dark Some kind of strength I've never had Though I'd trade it in a second To have you back I gotta try to make some good out of the bad.
Henry Goldberg, 7; Illness Led to Controversy
Friday, December 13, 2002; Page B08 Henry Strongin Goldberg, 7, whose parents' fight to save him using pioneering embryo research raised ethical questions and brought his case to national prominence, died of Fanconi anemia Dec. 12 at a hospital in Minneapolis. Henry, who lived in Washington, was a student at Jewish Primary Day School in Silver Spring when he wasn't convalescing at Georgetown University Hospital. Doctors in 1995 determined that he had the rare disorder, which causes bone marrow failure. Working with geneticist Mark Hughes, who later resigned from Georgetown because of his research, Henry's parents, Allen Goldberg and Laurie Strongin, produced test tube embryos in the hopes of conceiving a child without the anemia. That child's marrow would be used in a transplant. Henry needed the transplant before the sibling could be born, and the procedure was performed at the Minneapolis hospital with marrow from an unrelated donor. However, the child of another family that worked with Hughes did receive a transplant of marrow from a sibling conceived for that purpose. Some ethicists and antiabortion figures denounced the process attempted in Henry's case, saying it amounted to "harvesting" children. Others, including Henry's parents, argued forcefully for its potential to save lives and alleviate pain. Henry's case was featured in the New York Times, on ABC's "Nightline" and on a family Web site. A "Nightline" producer described Henry as "an energetic, funny, scrappy, resilient little boy." He had been a member of the Dolphins of the Stoddert Soccer League in Washington and had gone to preschool at Adas Israel Congregation in Washington. Other survivors include two brothers, Jack and Joe, both of Washington; and his grandparents, Seymour and Patricia Strongin of Washington and Theodore Goldberg of Rockville. © 2002 The Washington Post Company I must have been gone longer than I thought. I couldn't figure out which way to turn the knob in the shower to get hot water. Standing in the shower I remember how often Henry liked to get in our shower and just stand there for what seemed like hours. Sometimes when he wasn't feeling so great we'd put a little stool in there for him to sit on. But he just liked to be in there with the warmest water falling over his body until his skin was "pruney." He was also always game for a kiss on the glass. I'd put my lips up to the shower door from the outside and he'd press his lips on the other side of the glass and we'd smooch. I didn't get a "death notice" in the paper in time. If anyone wants to make a donation in Henry's memory to the Fanconi Anemia Research Fund, their address is Fanconi Anemia Research Fund, Inc. 1801 Willamette Street, Suite 200 Eugene, Oregon 97401 Telephone: 1-541-687-4658 Fax: 1-541-687-0548 E-mail: info@fanconi.org http://www.fanconi.org Thursday, December 12, 2002
From: Nightline [mailto:listeditor@abcnews.go.com] Sent: Thursday, December 12, 2002 1:46 PM To: Nightline Mailing List Subject: NIGHTLINE: Henry's Story TONIGHT'S FOCUS: The story of a family who did everything that they could, and everything that science offered, to try to save their son from a fatal disease. In the process they ran smack into the cross hairs of the nation's stem cell debate. Using embryos for medical research ceased to be an abstract ethical debate for Laurie and Allen and became a life or death struggle for Henry. ---- Most of the time when you turn on the television or open a magazine or newspaper to read about new medical treatments, you will see the success story. The first person who got a pacemaker and lived, or the first set of conjoined twins to survive separation surgery. But for every breakthrough, there are many more patients who undergo experimental treatment only to see it fail. But even though the treatment fails, the patient still plays an important role, and offers a generous gift to our overall understanding of science. Tonight Nightline's John Donvan will introduce you to just such a family. Laurie Strongin and Allen Goldberg did not seek the role they played in medical research. They found themselves there unexpectedly in 1995 when their first born, Henry, was diagnosed with a rare and deadly disease called Fanconi Anemia. Immediately, they were thrust onto the frontlines of medical research. Before Henry was a toddler they found themselves in the middle of a debate that would soon grip the nation over embryonic tissue research. But for Laurie and Allen there was never a debate. Doctors told them that the best hope for Henry's future lay in a bone marrow transplant from a sibling. A perfect match. So Laurie and Allen went about trying to create just such a child through a cutting edge new medical technology that could determine with only a handful of cells whether an embryo would grow to be a baby free of the same genetic disorder as Henry, and also a perfect match for a transplant. A new baby who would save his or her older brother. Perhaps this story will sound familiar to you. Nightline first aired Henry's story last February. Tonight we choose to rebroadcast it because we learned yesterday that Henry, Laurie and Allen came to the end of their valiant struggle. Henry Strongin Goldberg passed away last night in his mother's arms. He was seven years old. We hope you will tune in tonight to see one family's story - where love and science intersect. Thursday, December 12, 2002 Sara Just and the Nightline staff Nightline Offices Washington, D.C. From: Nightline [mailto:listeditor@abcnews.go.com] Sent: Friday, February 08, 2002 1:08 PM To: Nightline Mailing List Subject: NIGHTLINE: Henry's Story: Going to the Edge of Science TONIGHT'S SUBJECT: It's easy to debate medical ethics when it's not about you, not your loved one fighting for his or her life. One couple pushed the medical, and ethical, limits in an effort to save their son. Their story raises all sorts of complex and somewhat troubling issues, but can you fault them for trying to save their son? A very personal look at a difficult story. ---- Today’s Nightline email was written by correspondent John Donvan: Hello, Leroy fans. L is fine, but this morning at 9:16 precisely, he dropped me the following line (via our in-house email): “I would love it if you would write today's email.” He’s the boss, so here I am. If he wants a day off, so be it. Actually, Leroy is here at work today, fit and fine, and the real reason he’s handed over to me is that he knows I have a personal connection to tonight’s report, which may be worth sharing. The little boy who is the subject of tonight’s program is named Henry, and last year he was in the same nursery school class as my own little boy. Actually, Henry was there in name only. They kept a cubby ready for his jacket. They talked about him often. They marked his birthday. But Henry never showed up. He was at home most of the time. And when he wasn’t at home, he was in the hospital. He has a disease called Fanconi anemia, and, as I explain in the tonight’s report, it is a child killer. That entire year they kept Henry’s cubby ready in my son’s class, I never once met him. The truth is, I never really asked a lot of questions about Henry. I never talked with my son about him. I recall that when the hat was passed to raise funds for one of his many operations, my wife and I wrote a check. But Henry, the boy, was an abstraction to me. It was only after one of our senior producers spotted a piece about Henry in the New York Times, and asked producer Peter Demchuk and me to look into whether there might be the germ of a good Nightline report there (and at that point none of us knew the kid in the Times article was the same kid who was enrolled in my son’s class) that I had introduced myself to Henry and his parents. Meeting them reminded me, once again, how easy it is to turn other peoples’ lives into abstractions - to see nothing of your neighbor’s dreams and struggles. Henry, it turns out, is an energetic, funny, scrappy, resilient little boy. His parents are bold, tireless, inventive and bursting with love for the son whose life they will do almost anything to save. You spend some time with all three of them (there are two other boys in addition), and you come away feeling they deserve a medal just for how wide they smile. But theirs is also a tough story. There has been a lot of real pain, physical and emotional. This is not one of those stories that promises a miracle cure. In fact, the thread of tonight’s report is how Henry’s parents attempted one particular kind of cure that was riddled with controversy - not just medical, but also ethical, with many overtones of the arguments we have all heard swirling lately over stem cell research and the use of fetal tissue. Those arguments often, for most of us, lapse into abstractions, hypotheticals, what-ifs. But for Henry’s family, none of this is abstract. Facing life or death, they had to make real choices, and they did. Watch tonight. Meet a great kid. Not an abstraction. Friday, February 8, 2002 John Donvan Correspondent Nightline Offices Washington, D.C. Wednesday, December 11, 2002
at 6:40 pm central time, henry strongin goldberg died. i removed his breathing tube and his heart stopped beating while laurie held him in her arms on a rocking chair in his room.
henry remains a warrior to the end. we are less than an hour away (central time). it is all pretty surreal right now and i know the reality is going to hit very hard in 45 minutes. my sister and her family aren't here yet. these are a few photos we just took. i have a sense that the posts will trickle off soon.
     
we are listening to smashmouth and doing arts and crafts. here is henry's hand print. more to follow. 
i just took a nap on henry's bed. i was laying on the end with my arms wrapped around his leg. so nice and perfect. no-one else is around.
i have an idea. if anyone out there has any good henry stories or anecdotes, please email them to me and i'll read them aloud at 6 pm. thanks! that way everyone can share in this moment. we love you all
dr. wagner was just in and we all sat around reminiscing about henry. the one thing that struck me is that henry always said, "let's just get it over with," or let's do this already," when he was going to have a procedure, or had to get blood drawn or had to go to clinic. he was impatient for the not-so-fun stuff to be over so he could get back to the good things in life. i know that henry is glad that we are following his instructions and "just getting this over with."
they have him on pentobarbital which keeps him very relaxed and in a dreamlike state. we'll remove a lot of the tubes and the ventilator at 6 pm. we will get everything out of his mouth so we can kiss him. hopefully we'll be able to cradle him in our arms. we'll play his favorite songs (my brother-in-law brought some of henry's mixed cd's from home) and probably tell some good henry stories. a rabbi will be with us and we'll say the vidui prayer and the shema. I think I'll go swipe the menorah from the lobby of the hospital and we can break the rules and light the candles. Henry's last words to Laurie were, "Mom, this is a terrible last day of Hannukah." maybe we can make it better. henry will come home tomorrow morning on a flight separate from us. he'll then be at Danzansky Goldberg funeral home and if anyone wants to sit with his body you can contact Danzansky Goldberg at (301) 340-1400, 1170 Rockville Pike, Rockville, MD 20852.
the funeral is tentatively scheduled for 1 pm on friday at adas israel synagogue in washington, dc. there are directions on the synagogue's website http://www.adasisrael.org.
I am very scared that we only have a few hours left with Henry. laurie and i both had the same thought. what do we do tonight after he dies. it's not like you're gonna head to the movies or out to dinner. and we aren't home. maybe we'll drive around the lakes and as laurie suggested eat some of henry's favorite foods, skittles, garlic bread, chips, chocolate croissants and other nutritionally deficient items.
i went with my dad and jack to get jack some big boy clothes for the funeral. i also bought henry the biggest swiss army knife they make. he always wanted one but laurie knew he was still too young. he doesn't have much of a palm but i put his fingers around it and he is holding it now. also, it is pretty ironic that we took jack to get something to wear when he couldn't care less. henry was the real clotheshorse in the family. he had style.
the clerk at the store asked if we were out having a shopping day. i wish i had the wherewithal to say, "no, we're removing life support from my son today." we're working on funeral and burial arrangements now. i ran into the manager of the ronald mcdonald house earlier i found that i had to actually say, "my son is going to die today and we are going to be out of here by tomorrow morning.
laurie and i just spoke with the doctor who first helped henry on the PICU. we told him that we want to shoot for 6 pm this evening. the funeral will most likely be on friday at adas israel in washington dc.
my dad just came in. he lost his mother, wife and now his grandson all this year. gotta go cry now.
we chose what day and time henry was born and now we'll do the same with his death. everyone is in. my friend, david abramson, cannot be back from israel in time to officiate at the funeral. the path is clear.
laurie and i have been able to grab a few minutes together here and there and we've had great conversations about henry. thank god for laurie's amazing memory. she is helping me because i am still a blank. she reminded me how when henry learned her cell phone number he became a big abuser. he'd call it every chance he got and left messages like, "hi mom, it's henry. i am just calling you to tell you how happy i am, how much i love you and how beautiful you are. see ya." he'd do this over and over. i'm glad my mom isn't alive for this. but i am sad that my dad is physically alone. we are here for him as are my sister and his friends, but how hard must it be not to have someone to lay next to in bed and talk about how much you loved your grandson and hear that everything will be alright. henry loves all of his grandparents, aunts, uncles, great aunts, great uncles and friends so much.
henry's school in washington is cancelled today because of ice. i'd like to think that they decided to close for a day to honor henry. strangley it is a lot warmer, nicer here in minneapolis. i just looked out over the mississippi and there is a thick fog. henry would have said, "it's smokey out today."
jack wants to blow off school and his field trip. that's probably a good idea. i think i'll take him to go buy a jacket and tie today.
henry and i are sitting listening to Joseph and the Amazing Technicolor Dreamcoat in the early morning quiet. actor was another profession i could have seen for henry. he was the artistic one while jack is the science guy. or baseball player. henry could hit the ball a mile.
 it is very nice. i cannot stop crying. i bet it is going to be like this for a long time. you'd think they'd have softer kleenex. this is what henry had to use for so long. that's no fair. i should have brought in some softer stuff from the outside. how can the nurses sit there and watch this. i talked to one of the doctors last night to make sure they don't stop caring for henry at the same level as before we decided we weren't going to go the distance. he really is so beautiful. Tuesday, December 10, 2002
just so everyone understand just how crazy this all is, here are pictures that henry and i took together less than a month ago right after we came up here. we took these to email to laurie, jack and joe to show them we were having a good time.
   well this isn't hollywood or hogwarts. my tears just didn't do it. nor did my kisses and hugs. this afternoon we spoke at length with henry's transplant doctor, john wagner, who told us he wasn't entirely convinced it was aspergillus. we decided (laurie wasn't too psyched, but did it for me) to go ahead with a lung biopsy to find out for certain if it is a bacterial or fungal infection. this was scheduled for tomorrow. about 20 minutes after we finished a BMT fellow came over to us to explain that they just received the results of another culture confirming the presence of aspergillus. that's it. no more. aspergillus is unbeatable, Fanconi anemia wins. this stupid genetic disease that i was sure was no match for the latest medicine and the greatest love beat us to a pulp. the ultimate defeat.  we are now focused on keeping henry comfortable. we'll discuss a strategy with the PICU attending for letting henry go gently. family members will start arriving tomorrow. we want to have everyone here when henry dies. we will have jack and joe front and center. laurie and i took jack to dinner tonight. jack drew a picture of the family, everyone has on kippot because of hannukah. henry has tubes and wires and is happy because he is out of the hospital.  i explained to jack that henry will indeed be happy to be out of the hospital and it will happen this week. i told him that henry fought very hard not to be sick but in the end the sickness was stronger. i told him that henry was coming home but he was not going to live any longer. i told him that we are going to have a funeral and we need jack to help bury henry just like he buried grandma. i told him that henry loves jack and henry knows that jack loves henry. he sat in laurie's lap with his arms around her and wept. i told him that he didn't need to be strong. laurie explained that she was crying because she is so sad and it is just fine for jack to cry as much as he needs. i dropped laurie off at the hospital and went to take a shower at the ronald mcdonald house. the water would only get luke warm. laurie is writing a eulogy. she is writing a book about our life trying to save henry's life. i started this diary to help her understand the chronology of this visit, which was supposed to be a short one, and what i have been feeling. i didn't know this would become the final chapter. as hard as it might seem to believe, i really thought henry would be president of the united states one day. i thought he had the wisdom and disposition for the job (like his mother, but i don't think she needs the headache).   i am not comfortable writing about him in the past tense. it'll take some getting used to. i don't think i'll be able to say anything at the funeral. i want to make a cd of henry's favorite music and have it duplicated and hand it out at the ceremony. then people can take it home and always think about this special guy every time they listen to the music. i know i'll be thinking of him every waking moment and when i sleep. i just want the good memories back. i know we rode the roller coaster at the mall of america last month. i just can't get the picture in my head. we've been saying goodbye for a while now, but it isn't very easy. the fact that his body is here but everything else is checked out is a good thing. it gets you used to him not being around. jack has just come over and is going to have a sleepover at the hospital with me and laurie. tomorrow he has a class field trip to a nature center. he loves that stuff. he'll be okay. joe is probably too young to know anything is wrong. maybe he does and that is why he won't stop smiling and walking and giving us joy. how incredibly lucky i've been to not only know henry, but to be loved by him and to be his constant companion for so long. after two years of hanging with henry, my best friend, i guess it is time for me to go home, love laurie, jack and joe, find a job and get on with life. so long my superhero.  Henry and I used to sing this together all the time. You've got a friend in me. You've got a friend in me. When the road looks rough ahead, And you're miles and miles from your nice warm bed. You just remember what your old pal said. Boy, you've got a friend in me. Yeah, you've got a friend in me. You've got a friend in me. You've got a friend in me. If you got troubles, I got 'em too. There isn't anything I wouldn't do for you. If we stick together we can see it through, Cause you got a friend in me. You got a friend in me. Some other folks might be a little bit smarter than I am. Bigger and stronger too. Maybe, but none of them will ever love you the way I do, It's me and you, boy. 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. Yeah, You got a friend in me. You got a friend in me. 
henry just went down to CT. it is amazing how many photos i want to take. i want to stop time but it isn't working. laurie just went out and bought a camera and is doing the same. the impulse, the desire to capture and savor every moment is so strong. henry is a mess, but he is the most beautiful sight in the world to me.
we are waiting for them to read the ct scans and discuss our options. henry was really do so well. he was peeing. his body temp was normal, his potassium improved. we turned the corner.  snoopy is coming by to wave to henry. now we wait.   
laurie is on her way back. i have been sitting next to henry with my head on his hand, my tears soaking his skin. in the newest harry potter movie tears give him life and in the first pokemon movie tears bring ash back to life. we seemed to be doing so well. all of his labs were really good today and he has been peeing.
i have asked that dr. wagner come over to see us after we get the ct results. he will be able to advise us what henry's chances are better than anyone. he won't be looking at just one piece, the kidneys or the lungs. i wish david (rabbi) abramson wasn't in israel right now. we could use his help too. laurie bought a camera because she was overcome with the desire to take pictures of him. he doesn't really look so good, but he is the most beautiful sight in the world to me. i don't know how i am going to let go, but if it has to happen i will.
they just dropped the bomb. the preliminary results of the bronchial lavage is aspergillus fungus. from the first days of our understanding of FA and bone marrow transplants, the doctors always cited aspergillus as the major cause of death for Fanconi transplant patients. reported attributable mortality from invasive pulmonary aspergillosis has varied, but rates are as high as 95% in recipients of allogeneic bone-marrow transplants .
they are going to get a ct done and if it is localized and not spread, they will operate and remove that part of his lung. you can imagine the risks associated with this kind of major surgery. i have a sense that laurie might want to let him go with dignity and peace and not subject him to this. this will be a most difficult conversation. please pray or think good thoughts or whatever. i wish it wasn't this. i love my son so much.
there's another surgeon here and the renal team just came in. henry has acute tubular necrosis which is a kidney disorder involving damage to the renal tubule cells, resulting in acute kidney failure. everyone feels he is "so far behind" that we really need to get the dialysis going right away. surgery is scheduled for late this afternoon. laurie is getting the crown fixed on her tooth and then will be back. we made an appointment for jack to see one of the child-family life specialists on the floor later today.
 they came in to do an ultrasound a little while ago and the technician asked, "where is henry's kidney." that happens every single time they do an abdomenal ultrasound. henry's kidney is a pelvic or ectopic kidney and it is very far down. once they thought he was born with only one 'cause they coudn't find it. we sit right next to the ventilator and it puff puff puffs away 24/7. it sounds like a small steam locomotive. the little engine that could. henry's gotta make it over that hill.  joe, as i explained earlier, is a great eater and probably doing the best of all of us. he is thriving, taking his first real steps right outside of henry's hospital room. henry's room is at the very end of the hallway. here is a photo taken in the "lounge" area that is just outside our room. the windows overlook the big muddy, which is plenty big, but not too muddy up this far north. it is a spectacular view and we get nice sunsets over the river. for some reason i really like driving across the mississippi all of the time. once, when we were here last spring, jack and i walked down to the river from the hospital and skipped rocks. very huck finn moment. most of the rooms on the unit are big with a bunch of babies in incubators or cribs under warmers. it is almost like henry is the senior resident here. one little girl down the hall was in surgery for 28 hours over the past 2 days for her heart. amazing. i almost forget about henry's stay at boston children's when he was just 6 mos old getting his heart fixed. i was looking up acute tubular necrosis and it was linked to this page on medline about septic shock. it is a good overview of why we are here. it says that you have a 50-50 chance of surviving, and frankly, those are better odd than we've had for a lot of other stuff we've been through, though this is the worst thing ever to happen to henry, by far. the real wild card remains the infection. they still haven't cracked that nut. nothing has "grown out" of the cultures they've taken. Definition Septic shock is a serious, abnormal condition that occurs when an overwhelming infection leads to low blood pressure and low blood flow. Vital organs, such as the brain, heart, kidneys, and liver may not function properly or may fail. Decreased urine output from kidney failure may be one manifestation. Causes and risks Septic shock occurs most often in the very old and the very young. It also occurs in people with underlying illnesses. Any bacterial organism can cause septic shock. Fungi and (rarely) viruses may also cause this condition. Toxins released by the bacteria or fungus may cause direct tissue damage, and may lead to low blood pressure and/or poor organ function. These toxins also produce a vigorous inflammatory response from the body which contributes to septic shock. Risk factors include underlying illnesses, such as diabetes; hematologic cancers (lymphoma or leukemia); and other malignancies and diseases of the genitourinary system, liver or biliary system, and intestinal system. Other risk factors are recent infection, prolonged antibiotic therapy, and having had a recent surgical or medical procedure. Prompt treatment of infections caused by bacteria is helpful. However, many cases cannot be prevented. Symptoms Fever, chills Feeling light-headed Shortness of breath Palpitations Cool, pale extremities Elevated temperature Restlessness, agitation, lethargy, or confusion Some physical findings may be easily detected: Rapid heart rate Low blood pressure, especially when standing Low urine output Signs and tests Blood gases may reveal low oxygen concentration and acidosis Blood cultures to detect infection Blood pressure readings are low Chest X-ray may reveal pneumonia or pulmonary edema The blood count may reflect infection Blood tests may reflect poor organ function or organ failure Treatment Septic shock is a medical emergency, and patients are usually admitted to intensive care. The objective of treatment is to: Provide oxygen, and treat respiratory distress if present Administer intravenous fluids to restore blood volume, and vasoactive drugs to treat low blood pressure Treat underlying infections with antibiotics Support any poorly functioning organs Hemodynamic monitoring, to evaluate the pressures in the heart and lungs in treatment of shock, may be required. This can only be done with specialized equipment and intensive care nursing. Prognosis Septic shock has a high death rate, exceeding 50%, depending on the type of organism causing the infection and the degree of organ failure. Complications Respiratory failure, cardiac failure, or any other organ failure can occur.
how cool is the internet. the nurse who was in the picu when henry first got here, jody, already knew about him. a week ago she had been researching fanconi anemia online because there are so many fa patients here and she came across henry's website. of course she had no idea she would ever meet him. when the doctors were discussing him when they brought him over, they knew he had a heart defect and she piped in that is was tetralogy of fallot and that it had been repaired. beautiful.
the surgeon is here. gotta go sign consent for them to cut him open again.
when i was trying to sleep, i kept trying to list in my head some of henry's favorite things
mommy his girlfriend, bella ari, simon small shiny objects joe pokemon drawing pictures taking pictures (henry got a cool Polaroid Mio Camera for hannukah) star wars harry potter disneyworld baseball, cal ripken dvds school light sabers yoda cartoons spongebob watches patagonia underwear his shiny nike sneakers his blankets batman sweat pants and sweat shirts his birthday swimming at nana's aunt alice's and uncle peter's beach house trading cards cactus cantina suzanne and meghan the manhattan pokemon store me jack marbles currency from around the world reading encyclopedia brown your bed at home electric blankets funland at the beach max's ice cream in glover park ice water catching fireflies shells eating crackers dressing in costumes i am reading this aloud to henry to remind him why he has to be strong and get better. what awaits him on the other side. i am all for bribing if it works. i'm going to add to this list as henry tells me more.
i found an mp3 sample of a sound of a waterfall and am playing it on a loop for henry. i think i'll buy the cd and have it overnighted. he always likes the sound of running water to assist his pee
30 cc of pee overnight. wahooo! henry must have heard everyone talking about surgery and decided to take matters into his own hands. if i am not mistaken, i would say his kidneys are slowly kicking in. hopefully it is enough to stave off dialysis and to give his body the relief from fluid buildup it needs. i am really looking forward to speaking with renal this morning. the tv is on and that is rare -- for 2 days i didn't even know there was one in the room. the today show. heatwave alert for minneapolis. it is going up to 45 degrees today. laurie slept over at ronald mcdonald last night and i slept here. i just called to update her and she was still sleeping. i thought they'd be up getting jack ready for school, but he told mom that dad said he didn't have to go today. which, technically, is correct. i told him yesterday that if he went then, we would reevaluate whether he had to go back the rest of the week. he said he "hated" school. i think he hates being away from us, hates seeing henry like this, being away from home, being away from his school, his friends, his lego, his power rangers, his bed.
henry has been taken off his sedation drugs but he is still out of it. the nurses explain that because his body isn't processing fluids, the drugs are still lingering and keeping him down. everyone wants some more responsiveness and maybe that will come today. i have a lot of confidence in henry. i have been whispering in his ear that if he gets tough and makes it out of here we will pick up the stakes and move to disneyworld. we'll set up house right in cinderella's castle. since we honored jack's promise and he didn't have to go back to school, we have no option but to ready ourselves for relocation to florida. i look forward to reporting more pee and more awakedness. Monday, December 09, 2002
henry is laying there like one big bloated catatonic boy. we talk to him all of the time like he can hear us. it is incredibly painful to do this. we talk in that loud voice one uses when they talk long distance on a cell phone, like it's going to make any difference. putting lotion on his body is a treat. we keep him all lubed up and moving from side to side. i hope that touch really does heal. it is sad that you cannot hold or hug him with all of the tubes and wires that have sprouted out of his body.
one thing that has been really bugging me the past 72 hours is that i cannot remember henry from any time before 7 am on friday morning. it is so strange not to be able to remember the past 7 years at all. i cannot bring into focus any images of henry playing, singing, fighting with jack, swimming, eating, cuddling, reading, hitting a baseball, kicking a soccer ball, watching movies, dancing anything. i have stayed home and taken care of him the past two years and my memory is blank. it is like how my memory of my mom is frozen on the day she died. to correct this i am going to watch a copy of the nightline dvd that we brought with us. henry was featured on it earlier this year and they captured a lot of good footage of henry being henry. i cannot wait. i have a feeling this will make me cry a lot. i keep having this headache (so does laurie) that is a result of not crying but feeling like i have to cry. when you weep a lot you get a headache. i wonder what is behind that phenomenon. why does the body punish you for crying. everyone always says, "go ahead and cry."
the renal folks just came in and let me know that they want to start peritoneal dialysis sooner rather than later. peritoneal dialysis uses the lining of the abdomen to filter blood. a cleansing solution (dialysate) is introduced into the abdomen via a catheter. a surgeon will place the catheter in henry's abdomen and the procedure will either be up here in the room or down in the OR. there is always concerns about bleeding with any invasive procedure with henry. his platelets are very low, but he is receiving a lot of transfusions. we are waiting for a surgeon to let us know his availability, but it looks like it will happen tomorrow. they describe this dialysis as more "gentle" than the kind where the blood leaves the body and is cleansed by machine, hemodialysis. henry's blood pressure is too questionable to go the route of hemodialysis. the way this works is that fluid, wastes, and chemicals pass from tiny blood vessels in the peritoneal membrane into the dialysate. after several hours, the dialysate is drained from the abdomen and replaced with new solution. we're now learning all about the kidneys. fun.
what is disturbing is that all of this has no impact on the kidneys' recovery. that will happen organically, kinda like the first breathe from a baby. they told me that the small size of henry's kidneys and the trauma they've endured in the past (from toxic meds) will lengthen the recovery period. it could take as long as 4 weeks for them to start to work on their own. what the dialysis will do is clean henry's blood and take away a lot of the excess fluid that has caused him to blimp up over the past 3 days. laurie is back at the ronald mcdonald house with her mom, her aunt and joe and jack. i bought her an aero bed because i cannot bear to see her physically uncomfortable in addition to the emotional anguish. henry is being brought out of his deep stupor and he just squeezed his eyes shut a little tighter when i asked him too. yeahhhhhh! i asked him if he wanted to see laurie and his eyelid flickered. i called her and told her to get back here. he hasn't responded to anything since.
smile, smile, smile
every time i think of you i smile for a while that's the one thing you always do you always smile, smile, smile acting out stories and hugging your friends i smile for a while you know what i'll do when i see you again i'm gonna smile, smile, smile like ripples in a pond and runners who pass the baton good feelings will go on for mile after mile after mile and your big heart circles the world every time that you smile doing those voices and telling your jokes i smile for a while your crazy hairdos and thriftshop coats they make me smile, smile, smile every time you break into a broadway song i smile for a while everyone around you starts singing along they smile, smile, smile like ripples in a pond and runners who pass the baton good feelings will go on for mile after mile after mile and your big heart circles the world every time that you smile o' you know i love you and i am glad you're my friend i smile for a while you know what i'll do when i see you again i'm gonna smile, smile, smile smile, smile, smile dan zanes and friends night time festival five records 20002 Sunday, December 08, 2002
Friday, December 06, 2002
Henry once again cheats death. and again it is laurie who has to save his life -- in a hospital. This morning at 7 am, Laurie called me at the Ronald McDonald house and asked that I rush to the hospital to be with her and Henry. When I got here, Henry was as you see him here.
 Last night, Laurie, Jack, Joe and I went to a Hannukah party and performance by Jack's school at a synagogue northwest of the city. It was fun and we actually saw some people there we know. Jack was awesome and it was nice to be altogether as a family, albeit minus one.  We decided to leave a little early and Laurie went to the hospital (after tucking in me, Joe and Jack) to relieve her mom and stay overnight with Henry. Before I went to sleep Laurie had called to let me know they were taking Henry for a chest x-ray because she noticed his breathing was very labored. All night long no-one could get Henry comfortable. He had an oxygen mask on but he was still in trouble By this morning, Henry took a precipitous downturn. His blood gasses were drawn and it was obvious to the PICU doctors who were being consulted by the Peds staff that he needed to be intubated. They rushed him to the Intensive Care side of the floor. Before they could get the breathing tube into him, his pulse went faint, and his heart stopped beating and he stopped breathing. CPR was done and adrenaline was administered. They got his heart functioning again and proceeded to intubate him. He is now on a ventilator. In addition to the tube down his throat, a new central line was placed in his groin going up to his heart. Henry has been given medication to paralyze him, so his body can focus on essential life sustaining functions. The preliminary judgment of the doctors is that Henry has an infection and when they administered antibiotics to treat that infection, toxins were released into his body. I think this is called sepsis or septic shock. There is a mass of fluid in his lung which they now are draining. He is in very critical condition. My sister flew in immediately. Laurie's sister, dad and my best friend Bill are all in transit. Henry isn't going to die. In fact, if the infection is pneumonia and they can treat it successfully, then hopefully the pain in his shoulder will be resolved. Whenever Henry has pnuemonia, his shoulder hurts him terribly. Right now he is laying catatonic on the bed with a plastic pillow of warm air bringing up his body temp, which is kinda low. I am holding his hand (when not typing) and I talk to him a little bit, though I know he cannot hear me. I was just telling Laurie how a day or two ago, I told Henry that my goal was for him to feel well enough for me to give him a big hug. His body's fragility has robbed us of the physical contact that I love so much. Laurie said last night he sat on her lap on the wheelchair ride to radiology and she was in heaven. We're waiting for a blood transfusion, but in a snafu the blood bank hasn't readied any. He is stable. This is sad. 
 Thursday, December 05, 2002
a good night overall. we made two adjustments last night. i asked the resident to figure out how they were keeping henry comfortable when the pancreatitis was just diagnosed. she came back and said the dose of morphine was higher last week. so she wrote him for more. then, when the nurse came in and asked if we wanted henry to get the morphine when he wakes up during the night, i said "no, just keep it coming, even if he is sleeping." i remember someone once said "stay ahead of the pain" and that has been my mantra of late. don't wait for him to wake up in agony. keep him in a comfort zone. it worked. we only got up for vitals and for peeing and pooping and when the nurse made noise. no long sessions of moaning and discomfort. there was a lot of sleep happening in this room last night. henry actually sounds/seems like his almost normal self this a.m. when he woke up to go poo. the anger, sadness and pain have subsided a little. maybe even his counts went up a bit to round out this very encouraging night. there's the miracle i was asking for.
happy hannukah!  Wednesday, December 04, 2002
 henry's outing sucked. he was miserable and couldn't get comfortable. we got the R2D2 and high-tailed it back to the hospital. he was moaning and whining the whole way. probably did not have the desired therapeutic effect, but it did show him he can get out of here. i just bought some batteries and will put everything together tonight. where's the joy?  laurie had an excellent discussion today with dr. van burik, henry's infectious disease doctor. she is very engaged in henry's case. when we first got here henry named a baby fish "chilly" that is in the aquarium in her office. dr. van burik feels that the the pain is most likely still a result of the pancreatitis. dr. van burik also is a strong advocate of allowing henry to go back to school as long as we take good infection control precautions. she smartly wants to reconvene the panel of all of henry's specialists, GI, Hem/Onc, ID (and i should recommend they pull in psych) next week to discuss the case. this group met once right after we got here and did all of the diagnostic testing. henry's pain is still so intense that we are asking that they look at pain management alternatives. i like the idea of oxycontin. that is what my mom was on up to her death. i continue to get freaked out how much henry's face and body remind me of my mom in her last days. when he grimaces in pain, i swear i can see her face in him. as long as there are drugs that can do the job, there is absolutely no reason for henry to suffer. if he sleeps through the next couple of days while his body repairs itself so be it. i am asking the resident that is on tonight to try and figure out if we can give him something different. god, i feel so bad for him. he is so uncomfortable. he is moaning and can hardly talk. he is so tough. too tough. tougher than the rest. wow, henry just asked for some apple juice. he hasn't had anything to drink but water for days (weeks?). this is promising.  laurie's mom came, like the calvary, and hopefully her help will relieve some of the stress we're feeling. laurie, joe and her mom went to the bruce springsteen photograph exhibit at the university's frederick weisman art gallery today and said it was phenomenal. we talked to henry about him going with me on another "pass" out of the hospital. there may be a way to wheelchair it there in the tunnels that connect all of the buildings here. i'm not looking forward to tonight. how about a hannukah miracle.
i think it would make a lot of sense to have all of the disney, hbo kids, nickelodeon, cartoon network and boomerang networks on cable in children's hospitals. can't they donate that service?
every night at 11:30 when i stay with henry, we watch tom & jerry cartoons on cartoon network for half an hour. i try to laugh out loud to see if i can get henry to chuckle along with me. sometimes it works. that's gold.
i haven't seen his counts from today so i don't know if henry has started to trend upward, but the latest counts continue to have me worried and depressed. i agree with laurie and (i think the doctors too) that the fact that he is an emotional wreck, depressed and hopeless, is definitely hampering the recovery. the wise doctors gave him a "pass" out of the hospital today and i really hope that buoys his spirits a bit. laurie and i are going to take him to toys 'r us where he is going to buy an R2D2 robot that he has wanted for some time. it responds to voice commands so i wonder if we can get him to wipe henry's butt and fetch him his urinal or drink of cold water. i know that attending to henry's needs is killing his caregivers. maybe a robot is just the thing.
unfortunately it feels like henry is hysterical most of the time he is awake. i just gave them the okay to give henry 25 mg of benadryl to put him to sleep. that isn't working. i just asked for morphine. so now he has morphine, codeine, benadryl and a bunch of other stuff coursing through his veins and he is still thrashing about complaining of pain and the inability to sleep. incredible. he is shaking and can only get words out staccato. i think we are close to getting him on selexa or lexapro or something to take the edge off. dr. cheng of child psych is handling that, but hem/onc hasn't really been consulted yet. i worry about drugs on the growing brain thing (watching too many ADHD and Ritalin stories on TV), but it isn't fair for him to suffer so much and be so sad all the time. tomorrow marks a month that we've been here in Minnesota and safe to say we're all pretty burned out. the rest of us are paying a physical toll. i finally kicked my stomach bug last night, my knee is screwed up from wearing too big shoes (idiot) and it eerily creaks when i walk, laurie lost a crown which she is getting replaced this morning and jack isn't eating or sleeping well. the cool thing is that jack is going to the Minneapolis Jewish Day School. judaism is like a private club with reciprocity at clubs throughout the world.  though everyone in the family is itching to go home, i am worried about leaving too soon and having important issues unresolved. i really want those few good weeks of nutrition, no pain, stable counts, but laurie, understandably, doesn't believe that is going to happen any time soon and thinks henry will be better off at home. sometimes i think she is the champion of "quality" of life, while i stick crazily to this notion of "quantity" of life. but it really isn't that simple. i think that we often get to the point where we've had just too much of the hospital and all of the associated dehumanizing nonsense and get greedy for home. and we think that the more we're away the harder it is for henry to get better because his emotional well-being has such a strong connection to his physical recovery. but often we rush home only to turn back around a day or a week or a month later for the hospital. in this case, laurie may be right that Minnesota has done all of the critical diagnostic and clinical work to get his GI system running again and to treat his GVH, and now we can care for him at home and Georgetown. i really don't know what is the right course of action, but i normally defer to laurie because she is so damn wise. Tuesday, December 03, 2002
taking inventory. in the past month i have had tix but didn't go to...
vikings v. falcons vikings v. packers redskins v. rams minnesota v. michigan (college) fountains of wayne kim richey testimony to my optimism i guess. henry's blood counts continue to plummet. the docs haven't a clue. his platelets were 8K this morning. possibly/probably the lowest since transplant. they want to do a bone marrow aspiration -- perhaps he has graft versus host disease in his marrow. that doesn't sound good, does it. i haven't been able to patch together more than 3 hours of consecutive sleep in 4 nights. i am burned out and don't think i am a good cheerleader for henry right now. he needs to be gently pushed and prodded and cajoled to help him get out of the hospital. whatever his physical problems, they are just totally crushed by his emotional upset. i think his insistence on morphine for the real or phantom pain (i think it is real but not that terrible, more like a "soreness") is the saddest thing to come along in a while. but i have long since learned not to doubt or second guess henry when it comes to pain. he fell last night after pooping and i had to quickly grap his arm to keep him from hitting the floor and ripping out his tubes. of course i had to grab him hard on the arm that is presenting him with so much pain. this is madness. henry slept a bit last night. i didn't. i was too scared of everything, of him waking up in pain or needing to poop, of him not making it out of minnesota. pat is here tomorrow and i told laurie that i need to take a half day for myself. i am going to buy a winter coat and see if i can go to the calhoun beach club (our old apt.) and take a long sauna and whirlpool bath at the fitness club. i used to do that every other day (when i wasn't at the hospital with henry) when we were here in 2000 for transplant. i never got sick or burned out. i gotta say that pampering goes a long way in crappy times like these. laurie is smart. she is trying to strategize how to get us home soon because she thinks that it will perk up henry. that is true but what nags at me is that we reach a certain point that we cannot bear being away and then the tradeoff is his physical well-being for his emotional health. my fear, of course, is getting him home and having him just get sick again. i think that has happened before. i kinda want to stick it out here a while longer to get those few "good weeks" in but being away from home my be doing everyone more harm than good. it is so hard to figure this all out. laurie usually has a good sense of what is best to do. i think i have more patience because i have more optimism. i keep thinking who cares about a week or month or year when it buys us a lifetime. maybe that isn't an option or the right way to think. it is all very christmassy here, in the hospital and the ronald mcdonald house. i feel like a bagel eater among bacon eaters.last night i took the boys down to have our first communal dinner. santa claus showed up too. scared most of the kids. i couldn't identify any of the things that had been mashed into the dozen or so noodle and macaroni based dishes. the volunteers who (sweetly) donated the meal maybe should have coordinated a little better. instead of a bunch of brown things there could have been something green. jack wanted a salad which my dad made for him from the communal fridge. joe had some milk, two spoonfuls of yogurt and i ate celery. my dad scooped up a lot of the casserole looking stuff and chowed down. how come i didn't inherit his intestinal fortitude. laurie, henry, jack and i are as finicky as they come. there is hope for joe, though. there is this huge family of south dakota ranchers staying in the same part of the ronald mcdonald house as us. not much in common. laurie is down on them 'cause they don't do their dishes and leave their food out all night. they just sit outside in the below freezing temps and smoke. stress is one thing we have in common, i guess. overall, it is a great facility and the people are really nice. oif course yesterday we got the flyer under our door that some kid staying there had tested positive for chicken pox. i can imagine the shudder of fear that ran through every other adult in that house. luckily, it is very unlikely that joe was exposed. joe seems to be doing the best of all of us. in the past two nights jack threw up all night and then emotionally cratered the next because we have lost his blanket in all of our moving around. laurie said he was sobbing last night. dealing with the emotional is so much harder than treating the physical ailments. we're coming up on our one month anniversary here. let's hope things start to improve soon. Friday, November 29, 2002
i finished my dinner - the dregs from the pretzel bag. god, my feet are freezing. i tried to grab two hot packs from the supply closet and put them in my shoes, but they've run out. henry is a heavy hot pack consumer. so why did this hospital have to be in minnesota when it could just as easily been in florida or california. and why are there no good looking people (other than laurie) with sick kids. it is probably that all of this is so trying it makes people look more drawn and forlorn than they normally are. but this kind of pain and suffering does appear to hit the less fortunate disproportionately. what's up with that. probably all of the medical needs of the rich and good looking are met in florida and california. liposuction, subtance abuse that sort of thing. i'll just have to settle for curling my toes around henry's very toasty urinal.
this is from the other night.
if you want to know what this life is like, the next ten minutes or so capture it as well as anything. i haven't gone to sleep yet because the night has been filled with anxiety, caregiving and trips down the hall to the washer dryer. i'm cleaning our clothes and henry's soiled underwear. he's been having accidents. it's the second night in a row with little-to-no sleep.i don't feel so great and am worried i might be getting sick. getting sick isn't an option because i'll be of no use to the person who really needs to be cared for. it is hard to get any sleep on my fold out chair which is a good foot shorter than i am.
4:10 am
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