Tuesday, September 30, 2008

Hen, I have a bunch of photos of Mom, you, Jack and Joe on my desk at work. The only other photo I have is one of Barry Simon.

Maureen Roy Photography: In Memory of Barry Simon

Wednesday, September 24, 2008

This is what I mean when I say you were so darn cute.

Henry, the Superhero Negotiator from Allen Goldberg on Vimeo.

Henry and Me at St. Michaels from Allen Goldberg on Vimeo.

I haven't been able to tell you about Mom's project until now. Check this out. This is huge.

Hyperion Memoirs

Hyperion executive editor Leslie Wells bought world rights to Laurie Strongin's Saving Henry in a deal with Heather Schroder at ICM. This memoir will describe the author's struggle to save her son, who suffered from a rare childhood illness called fanconi anemia, as well as the impact Henry's courage had on the many nurses, doctors, friends and family who interacted with the boy throughout the family's search for a cure. Pub date is spring 2010.

Monday, September 22, 2008

Nana just got back last night from visiting your cousins over in London. We're the next to head over. We leave on Thursday for a week, including Rosh Hashanah. Here is a picture of Nana, Aunt Abby and Rachel.

Papa Sy was heading to the airport to pick up Nana when he stopped by our house for a while because her flight was delayed. He was treated to an evening of home movies of you.

Mom is working on a project and to help her I've pulled out some of our Henry videos to watch. I thought I transferred all of the tapes to DVD, but obviously I didn't.  We sat watching things that we never knew we recorded. It has been incredibly awesome and incredibly sad watching you. 

I was wondering how it was affecting Papa Sy to sit there with us, especially since he is in some of the movies with you. He's old school. He doesn't wear his emotions on his sleeve, which is to say if it made him sad, he wasn't going to let it show or say anything. But it had to hurt.

The funny thing is while I watch those movies, what enters my mind is wondering how the heck can you be dead when you were so darn cute and we were having so much fun. I know Mom is thinking the same thing.

Mom told me later that it is really hard for Joe to see these video. When Mom took him up to go to sleep, he asked her if you could come back for just a day so you could play with him. He said that he'd do anything you'd want - if you wanted to play baseball, he'd play baseball with you. If you wanted to play soccer, he'd play soccer with you.  Mom says that he is really upset that he doesn't know you well. 

I can understand that.

Family prays for donor match
2 kids have rare blood disorder
    HAMILTON -- Lucas Blake cradles his baby brother in his arms and the 7-year-old gazes at him with dark eyes full of love.

    They are more than brothers; they are soldiers in arms. Baby Owen was supposed to be his saviour. Instead, he has joined Lucas in the same struggle to survive.

    And as their father watches his two ill sons, all that keeps ringing in his ears are Lucas' words when he found out, "But Daddy, who's going to help me now?"

    Lucas came home from his Grade 1 class last January complaining he wasn't feeling well. A bundle of energy who usually loves horsing around with his older brother Noah, he was suddenly overcome by fatigue and running a fever. His parents, Manuela and Keswick, initially assumed it was just the flu. It was only when they told their family doctor that they'd noticed Lucas had been bruising recently that something more serious was suspected.

    After weeks of tests, the Blakes were given the devastating news: Lucas has Fanconi anemia, an exceedingly rare, genetic blood disorder. He needs blood transfusions to keep him alive, but his only hope for a cure is a bone marrow transplant.

    Through their tears, his parents were suddenly seized by hope. In the midst of trying to find out what was wrong with their son, Manuela, 41, had discovered she was pregnant.

    "We only planned on having two children," says Keswick, 37, with a sad smile at his beautiful family sitting around the kitchen table. "When we found out she was pregnant, we thought for sure it was a miracle."

    Their miracle baby had to be the answer. Lucas' big brother wasn't a bone marrow match and neither were his parents. The new life growing in Manuela's womb became the focus of all their hopes. "I just thought God gave me him for a reason," she says. "He was going to save Lucas."

    Owen was born in June but tests eventually showed that despite their months of prayers he could not be a donor for his brother. "To get that news," Manuela confides softly, "it tests your faith."

    But there was more. Several weeks ago, they were called into a meeting at McMaster University hospital for news even more crushing -- not only can Owen not help his brother, but he needs his own saviour -- he has Fanconi anemia as well. Now the Blakes face the Herculean struggle of finding not just one bone marrow donor, but two to save their boys.

    What makes their quest even more difficult is their ethnic backgrounds: Keswick was born in Jamaica and Manuela in Portugal. The boys' best chance of finding donors is within their own ethnic group, but no one in their extended families is a match and about 75% of the people on Canada's one match stem cell and marrow registry are Caucasian.

    Shy and private, it is obvious that speaking about their family's ordeal is excruciating for both parents, yet they have no other option but to come forward to appeal to readers, especially those from their communities, to register as potential donors at onematch.ca.

    "We feel so helpless," Manuela says, as she rocks the baby to sleep. "We're leaving our kids in someone else's hands and begging, 'Please fix them.' We're pleading to the public because we don't know what else we can do."

    Joining the donor registry is as simple as requesting a kit from OneMatch and sending back a few swabs of the inside of your cheeks. That DNA information is then stored in their database for potential patients around the world.

    If a match is made, the transplant is usually much simpler than it used to be when bone marrow was drawn from the donor's hip. With the newer peripheral blood stem cell transplant, a drug stimulates a donor's bone marrow to release stem cells into their bloodstream. Those cells are then harvested from their blood and transfused into the patient.

    Since the search for Lucas began in March, no match has been found. "We're pleading with people of different ethnic backgrounds to find it in their hearts and get tested," Keswick says. "If it doesn't help our kids, it might help other kids out there.

    "Just look at those boys and help them," he begs. "It's hard to watch them slip through your hands."

    The life expectancy for those with Fanconi anemia is just 22 years. Lucas' health is already failing and because his immune system is so weak and he can't risk infections, he can no longer go to school or play with a lot of other kids. Visitors to the house are asked to wear a mask and when Lucas does venture outside, he puts on one of his disposable Mickey Mouse masks as well.

    "Kids make fun of him," his mom says.

    "He gets really depressed about it," Keswick adds. "He's always asking, 'How long is this going to take?' "

    Owen is too young to understand what he is facing. But Lucas hears it all -- how he might die, how his parents are terrified. He watches them fight back their tears in front of a stranger and soon the little boy can't help crying as well.

    His mother quickly draws him to her, hugging him close with one arm, cradling his baby brother with the other. "This is my soldier boy," Manuela whispers to him. "He's my strong boy. We're going to fix it, aren't we, baby? Yup, we're going to fix it."

    Please help them try.

    Friday, September 19, 2008

    Mom and I had dinner the other night with a new friend. He works at Disney. We spoke about you. He is someone, like our friend Hugh, who I think would have really wanted to know you.

    I made this picture just now to send to him.

    You were a big fan of Disney World. I think the hugs make that pretty obvious.

    Thursday, September 18, 2008

    I was with you in a dream last night. You were in the hospital and appeared to be doing okay. I was visiting you. It took a while to get there. We had to navigate around a huge ditch and all this other weird stuff.

    We had a good time together but near the end of the dream I was in the hallway of the hospital outside your room and some doctors and nurses asked me what was wrong with me. I told them that I had a dream and in the dream I saw clearly that you were going to die.

    How about that - a dream inside a dream. I can't remember that ever happening before. I stayed awake right after I woke up from the dream. I had trouble holding on to the part where we were together.

    Sunday, September 14, 2008

    I got up at 4 a.m. so I could get back in time to go with Mom and your brothers to today's Redskins' game. Mom and the guys picked me up at the airport and we went straight to Fedex Field.

    It was hotter than the surface of the sun and Jack was definitely not-too-thrilled to be there, BUT it was an amazing game and we won.

    The game was so exciting that even Jack came around. He was hi-fiving everyone. The Skins beat the Saints 29 - 24. It was perfect.

    Joe had been saying forever that I'd taken you and Jack to Skin's games, but he has never gone. Today we fixed that. He turned to me during the game and said, "Dad, thanks for bringing me to the game." That was even sweeter than the victory - which was pretty sweet.

    When we got on the shuttle bus to go to our car, these older guys were asking Joe if it was his first game. He said it was and then we all got to reminiscing about our first games. Mine was one of the most famous in Redskin history. Walt Garrison was dropped, and I'm talking dropped by Ken Houston just short of the endzone to secure a Monday Night win over the Cowboys. I was there with Papa Teddy. I'll never forget it.

    I hope Joe will always remember today.

    Saturday, September 13, 2008

    As I told you, Mom didn’t come to the Bat Mitzvah, so it was a huge relief when this woman walked up to me before services and introduced herself. It was Rachel Grossman, who aside from being the mom of Jacob and Talia, wife of Alan and resident of Chicago, has the distinction of having once had a conversation with you.  Jacob has FA and when he was diagnosed she got in touch with us through friends and family. I remember talking to her, and Mom visited with her on a trip to Chicago. But what really made me light up was when she reminded me that she and you had a nice talk with you on the phone about what to do to make transplant at University of Minnesota a better experience for Jacob. 

    Your prescription: Magic Closet. 

    I didn’t ask her if they actually implemented the whole “closet in Jacob’s transplant room filled with toys and other surprises that produce magic to heal pain and boredom” when needed thing. I hope so. Dr. Henry Strongin Goldberg knew what he was talking about. 

    Rachel and I sat together and marveled at the beautiful ark. It was huge. I had never seen so many Sifrei Torah in a single ark before. I think there were at least 12 and they went all the way up to the ceiling. I had visions of rabbis suspended by wires –Mission Impossible style – flying up to grab the uppermost Torahs. We were looking for words to describe it and I think we settled appropriately on “awe inspiring.” 

    But the old scrolls really couldn’t compete with Molly for our awe. There she was up on the bimah. As she and the Rabbi and Lisa all acknowledged, she shouldn’t have been there.  As we know all-to-well, Fanconi kills kids, but in Molly’s case, love, science, doctors and faith all came together to create a modern day miracle. People throw around the word miracle a lot. It describes everything from a fake mayonnaise to a World Series championship, but I am confident that everyone sitting in that synagogue was privileged to witness the real deal. 

    Molly leading services, reciting her portion and delivering a D’var Torah was probably the most wondrous and wonderful thing that I will experience for a long, long time.  It was, as Mom knew it would be, probably one of the saddest things we could experience as well. It was as concrete a reminder of you dying, of us failing, as most anything could be. But as I explained, I like hitting my head on that wall. 

    In her remarks, Molly talked about her portion and how it tied in to her remarkable life story. Her takeaway was the importance of humility. She said that it was incredibly humbling knowing what it took to get her to that moment. From her parents to her doctors to god, she fully understood how much work, sacrifice, innovation and love it took to bring her to the bimah.  In addition to humility, Molly showed great wisdom- wisdom well beyond a Bat Mitzvah but befitting someone who has traveled the difficult, almost impossible journey she has made in her short 14 years. 

    I was humbled being there. I was honored to be there and that Molly and her parents thought to make us a part of the service. 

    I had a few hours to kill before Molly's Bat Mitzvah tonight so I headed to the hills. I went from Denver up to Boulder to go hiking. Mom told me exactly where to go. 

    Mom used to live in Boulder after college. She worked on a bike race called the "Coors Classic." I know she loves it here. 

    I went on a hike up to a peak called, Royal Arch. I figured it would be good training for the trip to England, since they're a monarchy. That means they have a king or queen. 

    When I got to the top, I pulled out a poem I've been carrying around with me a while waiting for the right place/moment to read it. It is called Threnody and it was written by Ralph Waldo Emerson about how sad he was when his first son, Waldo, died of scarlet fever. This happened way back in 1842, and I found the writing very hard to understand. But there were parts I "got" and could relate to. 

    You're my darling, wondrous, hyacinthine, gracious boy. 

    Here is just a short part of the poem from the beginning. I thought the mention of "looking over the hills," was cool considering I was reading it up 7,000 feet high.    


    The south-wind brings
    Life, sunshine, and desire,
    And on every mount and meadow
    Breathes aromatic fire,
    But over the dead he has no power,
    The lost, the lost he cannot restore,
    And, looking over the hills, I mourn
    The darling who shall not return.

    I see my empty house,
    I see my trees repair their boughs,
    And he, —the wondrous child,
    Whose silver warble wild
    Outvalued every pulsing sound
    Within the air's cerulean round,
    The hyacinthine boy, for whom
    Morn well might break, and April bloom,
    The gracious boy, who did adorn
    The world whereinto he was born,
    And by his countenance repay
    The favor of the loving Day,
    Has disappeared from the Day's eye;
    Far and wide she cannot find him,
    My hopes pursue, they cannot bind him.
    Returned this day the south-wind searches
    And finds young pines and budding birches,
    But finds not the budding man;
    Nature who lost him, cannot remake him;
    Fate let him fall, Fate can't retake him;
    Nature, Fate, men, him seek in vain.

    Friday, September 12, 2008

    Mom and I were planning to go to your friend Molly's Bat Mitzvah tomorrow. But the more Mom thought about it, she realized just how hard it would be. Yesterday, I had to make a decision. Would I stay home with Mom and your brothers, or head to Denver to see Molly become Bat Mitzvah. My first responsibility it to take care of Mom, Jack and Joe, but I also felt strongly it was important to go be with Molly and her family.

    I am now on an airplane looking out at the clouds. Being up in the clouds is totally different since you died. When you are little — at least it was for me — you think that heaven is up here in the clouds. Whenever you see a cartoon, or TV show or commercial and they show heaven, the people or angels are hanging out on clouds. So this is where dead people go.

    Even though I'm all grown up now and I know that out this window is just frozen water vapor, I am crying.

    Mom asked me how I made up my mind to go. I told her that I wanted to honor Molly and Jack and Lisa and the rest of their family for all that they've been through. It has been such a hard road — perhaps only they and we can really understood just how difficult it really was — and they have made it. Molly is here. She made it.

    I also told Mom that I often think about how sweet and amazing it was that they all came to Washington for your funeral. That was an emotionally and physically superhuman thing for them to have done at that time.

    And the last reason is maybe a bit more selfish.

    Mom and I grieve you in different ways. It is tough to describe Mom's grieving because it is so personal. But the best way to describe it for me is that I charge head first into things that might make me think of you. Sad and/or are hard to do is what I crave. Because for me, the sadder I am… the closer I feel to you.

    I have this need to be close to you, and it is getting harder as the years go by.

    On the bus on my way to work yesterday I was reading a story Jeffrey wrote about this guy John McCain, who is running for president. Here is part of what he wrote,

    "After John McCain was released, in 1973, he learned that on several Christmases during his captivity, his father had traveled to the northernmost reaches of American-held territory, to be as close to him as physically possible."

    For this weekend, at least, the place for me to be is Denver.

    Here’s the capper.

    Yesterday I was scanning some stuff to put on here and on the new blog I started for Joe. The first thing I scanned was this rainbow that Joe's drew at school the other day for me and Mom.

    Next in line was Molly's invite.

    When I picked it up to place it on the scanner I saw that she and her parents included words from the song
    Over the Rainbow.

    "Sometimes the dreams that you dare to dream really do come true."

    You know how I am a sucker for coincidences. That sealed the deal. 

    So here I am. Over the rainbow. In heaven. With you.

    Thursday, September 11, 2008


    ROANOKE RAPIDS - For young Dylan Moore, the wait for a bone marrow transplant is almost over.
    His mom, Betsy Moore, gave him the good news on Friday that a matching donor has been found.

    The 6-year-old has Fanconi anemia - a rare blood disorder that leads to bone marrow failure.

    In a few weeks, Dylan and his family will travel to Minneapolis where he will undergo a delicate bone marrow transplant at Fairview University Children's Hospital.

    “There are only about 500 cases in this country and not many doctors have seen this case, so we had to choose the doctor who had the most experience in treating this disease,” said Moore.

    Two years ago, Dylan was diagnosed with the rare disease and since then, his condition has been slowly deteriorating.

    Last year, he could not attend school because his immune system was too low - meaning his body could not fight off germs and potential infections.

    He was home schooled by means of an online system.

    ”He was forced into isolation when his blood count fell so low,” said Lenn Roberson, Dylan's aunt, and one of many champions Dylan has in his life.

    “I try to be there for him, but I guess the hardest thing for him is to not be able to go to school and see his friends.”

    Because the procedure is such a high risk, Moore said that her family waited as long as they could to go without choosing the surgery.

    With his bone marrow functioning at only 30 percent, the family's options are now limited.

    “We didn't want to go (with the procedure) unless we had to and at this point, we don't have a choice,” Moore said.

    Even after the transplant Dylan will still be facing some difficulties.

    “Dylan realizes he has a challenge ahead of him but he is a real trooper,” said Moore adding, that she is nervous, scared, excited and hopeful about her son's outcome.

    This Sunday, the family will host a going away party for Dylan, who turns seven on Sept. 18, where friends and supporters are invited to come and join in on the celebration at the Union Hall on Roanoke Avenue from 3 p.m. to 7 p.m. Family members request no gifts, only to stop by for a few minutes.

    “We appreciate all the support of our friends, family and the community,” said Moore.

    Freshman Again...: Essay #1 "When Bad Things Happen To Good People"

    Wednesday, September 10, 2008

    Essay #1 "When Bad Things Happen To Good People"

    When Bad Things Happen To Good People

    About six years ago, my cousin, Jenny Shields, died of a very “rare, inherited bone marrow failure disease” called Fanconi Anemia. Jenny is 1 of only 3,000 known cases in the entire world today. She was only twelve years old when she died and I was only thirteen. When Jenny was born she was not much bigger than a Barbie doll in size and they never could figure out what was wrong with her. Jenny was diagnosed at the age of ten and was on a waiting list for two years for a bone marrow donor. Time meant everything.
    Jenny’s bone marrow was supposed to do so much more than it was. It was only producing five percent of the blood cells it need to and if she did not get a bone marrow transplant soon then she would run out of time. The doctors told her that her white counts were so low that even if she contracted something as little as an ear infection, it could be critical. The process that Jenny and her parents had to go through was so intense and intricate that I could not see how anyone could go through such a thing. The family tried a number of procedures, but the bone marrow transplant was the only hope left. Despite that the disease was robbing her of life’s “sustaining blood cells”, she still seemed as happy as ever.

    Jenny always looked toward the better side and had hope for her condition. Her joy and great presence made it so much easier for those who surrounded her in this sad time. She could no longer go to school, doctors were telling her they could not help her, and she did not even know if she had a fighting chance, but somehow she stayed strong. Jenny wanted to be a veterinarian and saw herself with a future. She wanted to be a normal child and grow up. She had the mindset that everything would be okay and some how she made everyone believe her.

    There was a group of older ladies in the community around Louisville, Kentucky, where Jenny was from. The women each wrote a prayer on a small quilt square. They all pitched in and made her one big quilt with each of their quilt squares. Jenny loved the prayer quilt with all her heart. It was beautiful and full of the nicest prayers I had ever heard. Once, when Jenny was asleep my aunt, Jo Ann, took it from the bed and washed it. When Jenny woke up, she found out and was heartbroken. Jenny thought that because my aunt washed the quilt then all the prayers were washed away along with it. Jenny usually was able to hide hear fear in the inside, but when it came down to it she was even more scared than everyone else.
    Since most doctors knew very little about her disease, she was forced to an out of state specialist for her treatment. In the whole United States, there were only two doctors who specialized in Fanconi Anemia and could give her the help she needed. One was in Memphis, TN at St. Jude and the other was in Minnesota. Jenny and the family traveled to Minnesota to meet with the doctor who specialized in her case. A doctor who knew a great deal about Fanconi Anemia was a wish come true.

    The first procedure they tried was having my aunt get pregnant so they could use the baby’s stem cells from its umbilical cord to cure her. My aunt was not capable of having kids anymore; therefore, they had to artificially inseminate her other daughter’s egg, along with my uncle’s sperms, into my aunt. Every time they went through this and the baby’s stem cells did not match they had to terminate. My aunt, Jo Ann, went through this procedure five different times. One of the times she was pregnant with quadruplets, but none of them matched. The last time they tried, the baby finally matched and everyone was so happy, but Jo Ann ended up having a miscarriage. Money was becoming a very big issue and they could not afford to keep doing this emotionally or financially. Can you imagine how devastating that must be? To be so close to saving your own daughter and being denied happiness again?

    After they had lost all hope on that course of action, everyone was hoping for a miracle. Jenny was getting very sick and needed some type of cure soon. They never found a perfect match for a bone marrow donor, but they did find someone who was as close as they were going to get. They set the time and date for the bone marrow transplant for the very next day. Finally, more hope at last.

    I remember flying in and going to see how Jenny was. The hospital was so white and huge. It was crowded, noisy, smelly, and full of hurt and sadness. How would anyone be happy spending their last days in that environment? Jenny was already in surgery when we got there. It all happened so quickly. We received the phone call the night before and the next night we were there. No one had any idea what to expect. The next day everyone got to see her and find out how she was. She seemed well, even great for someone who had surgery just hours before. I only got to see her for a minute, but I still could never forget it. I was so relieved that she was okay. I could not bear to loose not only my cousin, but a great friend.

    The whole day everyone kept their hopes up that everything would work out successfully. We had to wait and see if her body would accept the new bone marrow and it seemed as if it was going fantastically. That night it went bad. She hit rock bottom. Jenny all of the sudden became dreadfully sick. I was back at the hotel. I remember hearing the phone ring. Immediately, we knew something was wrong. My grandma called and said it did not look good. We kept on praying. Then, the phone call came. That one phone call I would never wish upon anyone. Jenny was dead and it drastically changed everyone’s life at in an instant. Together my mom and I cried. It could have been for minutes, maybe even hours. I had no idea what to do, or how to react. All I knew was it had to be a lie. It had to be a joke, an awfully mean joke, but it was not. All hope was gone forever. Jenny, my cousin, my friend was gone forever.

    The next week was Jenny’s funeral. My mom, my sister, and I flew to Kentucky, where Jenny lived, and my dad drove from Arkansas to meet us there. Once we got there we went to stay with my grandma and the mood around us was indescribable. It was silent and sad. I was only thirteen and did not know if I did not know how to accept that she was gone for the better and that God wanted her to live a better life there in heaven. Should I be angry with him? When someone so young, so close, and so wonderful is taken away from you, it is hard to know how to react.

    The day before the visitation, we went to my great grandma’s house to see everyone and see how everyone was doing. We ate dinner and the whole time everyone looked so depressed. The family talked about how Calvin and Jo Ann, Jenny’s parents, were doing and it seemed like they were definitely not good. Jo Ann could hardly speak to anyone and Calvin would not speak at all. They both were in a major depression and the next day, when I saw them at the visitation, I immediately began to cry. Calvin hugged me. He knew how close Jenny and I were and we were almost the same age. I was surprised he even came up to me. I believe it was the saddest time of my life.

    Before the funeral the next day, they played a slideshow of Jenny and there was not one dry eye in the funeral home. This big vintage, distasteful funeral home was already sad looking enough. The tears and closed casket did not help matters. The people were all so sad and I knew exactly where they were coming from; I was sad too.

    As everyone drove to the grave yard that stormy sad day, I could not think of anything else except what had happened. Jenny was such an amazing young girl. She was nice to everyone and she did not ask for much. All she wished for was to be a normal child. Everyone gathered in the cemetery to watch her casket be carried to the gravesite. All the people there came around and put a flower on the casket. As tears ran down everyone’s faces, the preacher said a prayer and a few nice things about Jenny. We all watched as the casket was lowered into the ground. At that time, I knew Jenny was watching down from heaven and that she was in a better place.

    The loss of my cousin, Jenny, hurt her friends, family, and even people who barely knew her. She was the girl who would have made a great impact on the world. Still now, I think of Jenny every single day and I wish there could have been a way for me to make a difference, to save her, or at least say goodbye. Why do bad things have to happen to good people?

    A bunch of people who went to my camp 30 years ago got together this weekend - all because of you. It is a bit of a long story. The short version is that a guy I went to camp with all those years ago, Barry Eisenberg, saw me mention Camp Tel Shalom, here in these letters to you. He got in touch and we decided to put together a reunion.

    Barry is a beautiful writer and even more beautiful person.

    He said some very sweet and very funny things at the reunion. I asked him for a copy. Like your brother Jack, you would have loved camp.

    Barry Eisenberg
    Reunion Remarks
    September 6, 2008
    Hakshevu, hakshevuna, Camp Tel Shalom! I want to welcome you all to the reunion, and thank you so much for braving the weather – particularly those of you who came long distances.  I also want to thank you for your enthusiastic response to this reunion from the moment we launched the idea. It is a tribute to Marshall Green, Karen, the entire staff and even campers that together we all played a role in creating such a special place that even after 30-plus years still means so much to us.
    My remarks are a mixture of my perspective as one of the organizers of this event, and just my personal thoughts as a camper for four years. Over the last year, and particularly over the last 2-3 months, Allen Goldberg and I have spent a lot of time talking to each other, to some of you, and even to interested people outside our camp community about what it all means, major themes and big questions. And a few days ago I realized that, without knowing it at the time, when I wrote the short intro to the camp reunion web site I had actually captured some of the major themes about the camp Tel Shalom experience that are personally meaningful to me (and I hope to most of you as well).  Paraphrasing a little bit, I wrote on the web site that Camp Tel Shalom was…
    a launching pad, a proving ground or coming-of-age incubator that spurred growth to new places and phases. For others it was simply a fun place that bolstered their confidence, offering a chance to be a bigger fish in a smaller pond. Remember the way 100-plus voices rocked the chader ochel with rousing renditions of Im Tirtzu or Bashanah Haba'ah? Whatever happened to the girl sitting next to you who always softly sang harmony to Dodi Li? Was Camp Tel Shalom the site of your first romantic kiss or your first real girlfriend/boyfriend? Do you remember learning to swim or navigate a kayak in the slimy-bottomed lake? Were you amazed when you chanted the birkat hamazon as well as the kids from Jewish Day School?
    For me, those lines reflect the strong sense of community that our camp built really rapidly.  How friendships, romances and bonds are formed extraordinarily fast when you are living a highly concentrated daily life that is jam-packed with excitement, achievements, challenges, and so many rituals  -- both religious and secular  -- in a supportive and communal environment. Things happen faster and with greater impact in our “world away” than in the “real world.”
    In particular, the lines about being a bigger fish in a smaller pond are personally meaningful. Camp was important to developing self-confidence, trying new things, being a little bolder than you were at school.  Once you got on the bus at Adas Israel and departed for camp, your confidence was bolstered. At camp, you walked a little taller and with a strut to your step, you were more self-assured and flirtatious with the opposite sex than at school. And at the end of camp, you went back to school and the more diverse, secular world, still equipped with at least some of that gained confidence.
    The sentences on the camp web site that mention singing Im Tirtzu and Bashhanah Haba'ah and being amazed when, after only a week, you could chant the birkat hamazon – and enjoy it – point to a crucial role Camp Tel Shalom played in giving some of us a greater sense of Jewish identity and pride.  Particularly for those of us, like myself at ages 11-14, who were not so receptive to what seemed like stale lessons being delivered at Hebrew school and the institutionalized spirituality at my synagogue’s services. Camp was almost like sugar that made the medicine go down for a kid like me. In fact, at camp, it was no longer medicine at all. Certainly for a young kid, the beauty and spirit experienced at outdoor services in a rural setting, or the loud, highly energized singing of Hebrew songs in the camp dining hall, instilled a strong Jewish pride that I had not found elsewhere and I am grateful that camp gave me this taste.
    As I looked forward to this reunion tonight, and wondered what it would be like to see you all after 30 years, another theme struck me.  Over the months leading up to tonight I have communicated by email with so many former counselors who, in all probability, I had never said more than three words to as a kid. I began to enjoy the initially strange yet eventually nice leveling of the age gaps and social structure that seemed immense at camp but have disappeared today. For example, when I was 13-14 years old at camp, my counselors were my friends, but also caretakers and authority figures. Today I realize they were practically kids themselves -- many in college and most maybe only 4-6 years older than me.  Similarly, the gap between the oldest campers of say 15 and the youngest at 8 or 9 seemed so huge at camp. I really didn’t pay attention to the Chalutzim when I was in Bogrim. Now one of those whippersnappers could be my boss!  So, 30 years later, the reunion flattens all that out in a fun way as we have all become middle aged peers!  At least I think so…But I did have this dream about a week ago…
    DREAM:  A beer with Jeff Bernstein, brings out paper plate job wheel, cleaning toilets, Aryeh Davis: “or else no canteen.”
    I want to finish up by thanking a few groups of people in particular for keeping the Camp Tel Shalom spark going in me over 30 years – enough so that I would be crazy enough to be involved in planning this evening. 
    1.        I want to thank Herman Rubenstein and his family.  A few months ago my friend, Paul Finver, asked me, "Do you realize how beautiful Buffalo Gap was?” And it really was and we should all thank the Rubensteins for such a setting for our camp.  But I also thank Herman for really getting me to the Camp Tel Shalom community at all. In 1972 he came to my family’s house in Silver Spring with his camp slide show and convinced my parents to send me to good old, secular Buffalo Gap Camp with my brother and my oldest friend, Peter Shapiro, who many of you know. I really liked that camp, went back in 1973, and was prepared to return again in 1974 when a letter came to my parents explaining that Buffalo Gap Camp would be closing, but encouraging me to give something called Camp Tel Shalom -- a new camp that would be using the same property -- a try. I’m so glad I did. So thanks, Herman. 
    2.       I want to thank the 30-40 people – many who are in this room – who, like me, took their Camp Tel Shalom experience with them over to the Ramblewood location of the camp in 1981.  I was a counselor there for four years, and despite the Camp Tel Shalom name, it was really a different camp, a totally different era.  But those 30-40 people who went over to this new Camp Tel Shalom tried to bring over some tradition and institutional memory from the 1970s era of the camp, and that went a long way in making it a good experience for me.  It kept the spark alive. 
    3.       I want to thank everyone who sent us photos, rosters, ideas and suggestions that made this reunion so much better than our reunion committee could have managed on our own. Speaking of which, I particularly want to thank Penina Handlesman Maya, Andrea Schneider Rozner, Dale Madden Sorcher, Sharon Burka, and Jon Miller for all of their heavy lifting. And a huge thank you to Cantor Rochelle Helzner and Carmi Cohen Kobren for leading our Havdala service tonight and bringing the musical element to this reunion that was such a critical component of our camp. It would not be the same tonight without your contribution. 
    4.       Lastly, I’d like to go back to the beginning…and thank my partner, Allen Goldberg, for his cool-headedness, creativity, drive to get things done and just for sharing the load.  OK, and I guess also for putting up with me sometimes being a nudge and with my all my muschagas. Particularly my near meltdown in mid-June which prompted a memorable email reply to me from Allen with the subject line of “Dude, dude, dude.”  I hope, Allen, that you agree that all in all it was a lot of fun and very rewarding. 
    Allen and I really didn’t know each other that well at camp. But it’s really cool to be able to say that you’ve made a new camp friend 30 years later.
    I want to thank Allen along with Henry – Allen and Laurie’s son who passed away in 2002, for really being the catalyst for this whole event.  After Henry died, Allen and Laurie started the Hope for Henry Foundation, which works to improve the lives of children with life-threatening illnesses. In 2006, I guess I was feeling nostalgic and I was surfing the net  and decided o Google “Camp Tel Shalom”  to hopefully find out what eventually happened to it or if anyone was blogging or chatting about it.  There was only one single result that came back that had anything to do with our Camp Tel Shalom.  It was a few sentences about the camp that Allen had written in 2004 on his “Dear Henry” blog in which he writes letters to his son. That was the only mention. I remembered Allen from camp, so I contacted him and, well, here we are today at a reunion.
    I think it’s just wonderful that the catalyst for a camp reunion is a child. So, thanks to Henry Strongin Goldberg as well.

    Kevin McQueen, right, and Bill McCorey hold the Fanconia Anemia Research Fund flag signed by campers at Camp Sunchine, a summer camp for kids with Fanconia Anemia. - Photo courtesy of the McQueen family
    Kevin McQueen conquers Mt. Rainier for Fanconi Anemia
    By Sara Page, MidlothianExchange.com
    Sep 08, 2008
    If you ask him, Kevin McQueen will tell you he is not a mountaineer. Growing up, he spent time in the boy scouts and eagle scouts and he enjoys time outside camping with his family, but climbing mountains had not been a major part of his life. That is until this August, when - with his family in his heart and raising money for his son’s illness on his mind - he climbed to the summit of 14,410-foot Mount Rainier in Washington.

    McQueen, who keeps in pretty good shape to begin with, started training for the climb about six months ago when he was asked by friend Bill McCorey to make the trek. McCorey had made a summit attempt a year prior which was cut short by a 15-20 foot fall down a crevasse about 12,000 feet up. McCorey wanted to make the climb again and take McQueen with him and make the trek a fundraiser for the Fanconi Anemia Research Fund. Training for the trip proved no easy task though.

    “Mostly it was a strict diet of Little Debbie snack foods,” McQueen joked.
    “I met with a personal trainer, a guy from Endorphin Fitness and a neighbor of mine Mike Harlow and kind of laid out what I wanted to do … He tested me on where I was for the training program basically so I could increase my ability to process oxygen,” he said seriously.
    The program consisted of interval training, which got him running for 40 minutes at a time just below his anaerobic threshold. He spent time backpacking almost every Sunday on the Appalachian Trail to get ready for the vertical climb. By the time he reached Mount Rainier, McQueen says he was physically ready.

    The Climb
    Mount Rainier, by virtue of its height, sports snow and ice year round, so it’s not your typical summer hike. Snowfields start around 5,000 feet and from there up, climbing is done with crampons, ice picks, axes and ropes. All of the climbers in a group are roped together so that if a fall occurs in steeper or crevasse-heavy terrain, a rescue is made more feasible simply by the other climbers digging in. In fact, his rope team is what saved McCorey a year ago.

    “This [was] the first time I’ve had crampons and ice axes and ropes and climbing up glaciers and all that … I’ve always been intrigued by that but it wasn’t something that was in my foreseeable future,” McQueen admitted.

    The group of four from the metro Richmond area – McQueen, McCorey, Bob Cournoyer, and Todd Stormes – flew into Seattle, Wash., Aug. 13 and drove two hours to Ashbury, Wash., to the base of the mountain to meet up with guides from Rainier Mountaineering, Inc., and the rest of their climbing companions the following day. Friday was spent getting gear and going through orientation on the gear and the mountain.

    Saturday, Aug. 16, the group hiked to the snow fields and trained with the ice gear and learned how to self-arrest with the ice ax in case of a fall.

    On Sunday, the group started their climb with six hours of hiking up to Camp Muir. The hike takes climbers through trails and paths into snow fields and from an altitude of 5,000 feet up to 10,000 feet. The group met with their guides about the next day’s climb, had a quick dinner of freeze dried food and went to bed … at 6 p.m.

    “You don’t really sleep,” McQueen said. “You try to sleep … [but] you’re all geared up and it’s still light out … You stay in this plywood box that’s maybe a little bigger than [a standard size room]. It has a floor and two shelves that you sleep on and there are mice. It’s kind of cool.”

    The group was awakened at 11:30 p.m. with a departure time of 12:30 Monday morning with a goal of making the summit and then hiking back down the mountain in one day. Climbers rely on headlamps and the snow for light as they make their way from Cathedral Gap to the flats at 11,200 feet where they rest before attempting Disappointment Cleaver, a sheer cliff that is mostly rocks at this time of year. From there it’s nearly straight up to the top.

    “[Washington] had a lot of snow this year, which was nice because when Bill went last year, because the snow had melted so much, [they couldn’t do] the Knoll route, which is the route we took, so what happened was he had to go out on what is called the Emmons Glacier. It’s a lot bigger glacier with more crevasses. [This year] because they had so much snow, the Knoll route was still open, which is pretty rare, so it was a lot easier for us,” McQueen said.

    “What’s weird about it is that it’s a volcano so all the other mountains around there are about 7,000 feet. [Mount] Rainier is 14,000 feet so it’s just so much higher than anything else,” he said about being at the summit. “I’ve been on tall mountains before and you see valleys and there are mountains that are roughly the same size as you but this is so much bigger than anything else.

    When you’re up there … I felt exposed. I felt like I was going to fall off. It was just disorienting.”

    Mount Rainier stands in all its 14,410 foot glory in Washington. - Photo courtesy of the McQueen family
    The group had only one scary moment, which happened as they descended. A weather system coming through the area produced a major thunderstorm. No one was hurt or hit by lightning though.
    The climb, so far has raised approximately $50,000 with more coming in. All of the money will go to support the Fanconi Anemia Research Fund.

    Fanconi Anemia
    McQueen and his wife Lorraine received the news that their son Sean had Fanconi Anemia nearly nine years ago. He was born early at just a little over three pounds and had a horseshoe-shaped kidney and a bent thumb. Doctors tested Sean for a number of things but it wasn’t until he went to Dr. Joann Bodurtha at VCU that they got the final diagnosis.

    Though nothing appeared wrong, Sean’s small stature, his kidney, thumb and a cafĂ© au lait spot that had appeared on his lower lip nagged at the geneticist, who finally tested for Fanconi Anemia.
    Fanconi Anemia is an incredibly rare – only about 500 kids in the U.S. currently carry the disorder – genetic disorder. With 13 known forms of the disorder identified, both parents must carry the same type of mutation. It is also a recessive disorder so even when both parents carry the mutation there is still only a 25-percent chance of the child inheriting the gene.

    When a person is exposed to cancer causing agents, those agents try to replicate DNA and thereby affect cells when they go through their natural dividing process. The human body has a series of proteins that are activated that check through the cells to make sure they haven’t been incorrectly processed by cancer agents. In kids with FA, the recipe that their body uses to make the proteins either makes the protein incorrectly or tells the protein to stop its job too soon.

    Bone marrow cells are the ones most often effected by the disorder and so the kids with FA have a higher risk of developing leukemia, a type of cancer that causes the white blood cells in the body to overproduce and start eating at healthy red blood cells, or their bone marrow cells simply die off. Bone marrow is responsible for making blood. Eventually most kids with FA require a bone marrow transplant, which produces a whole new set of problems.

    “The normal treatment that you or I would get [during a bone marrow transplant] would kill these kids because they basically use chemo[therapy] to kill all your bone marrow and then put new bone marrow in,” McQueen explained. “The drugs they give [during a bone marrow transplant], FA kids just can’t tolerate them, so it’s a much riskier procedure.”

    “When we first got involved [with the FA Research Fund], the summer after he was diagnosed, the survival rate for bone marrow transplants were in the 18 to 20 percent range, so it was really your last resort.”

    Research has brought bone marrow transplant survival rates up to around 100-percent for a sibling match and between 80- and 90-percent for non-relation matches. Sean’s sister Kelsey is not a match for him.

    Only four centers around the country do bone marrow transplants for FA kids but with survival rates going up, research is now focused on how the disorder affects people later in life along with how and why the disorder develops in the first place and how to treat it and keep it from occurring.

    How to get involved
    It is not too late to donate to the fundraising effort from the climb or to golf or participate in a wine tasting dinner to benefit FA later this year. Links are below.

    As for future mountaineering adventure, McQueen says he’s still letting this experience settle in though ideas for a possible climb in 2010 have been tossed around.

    “It was very emotional for me,” McQueen said of making it to the summit of Mount Rainier. “It was such a thrill to make it on a personal level, I’d just come from FA camp and we got all the kids to sign a flag and I knew Lorraine was nervous … I had a whole set of families and I was leading the charge … It was overwhelming.

    “It’s hard to convey our level of appreciation,” he added. “We have a great group of friends that have helped us with this and the community and my company … It’s just hard to say enough thanks.”

    Donate to the Mount Rainier climbing effort, play golfhave dinner or see more photos from the climb.

    Monday, September 08, 2008

    Remember how Uncle Bill gave you the medal he received for running in the Marine Corps Marathon. It seems that someone else figured out what a good idea that is. I still have that medal in my memory box of you that I have next to the bed.

    The unbelievable thing about that medal was I think that was the time Bill ran the race without having trained. Some of his fellow Marines called him up after one of their group couldn't run (I think because he died tragically, but I need to check with Bill) and Bill jumped right in.

    He, like you, is one of my heroes.


    A marathoning doctor gives medals to patients struggling through much harder races.

    By Sarah Lorge Butler
    Photographs by Brett Kramer

    PUBLISHED 09/02/2008

    The day after he finished the 2003 Chicago Marathon, Steven Isenberg, M.D., a head and neck surgeon in Indianapolis, paid a visit to a colleague who was hospitalized. The two men were a study in contrasts. Dr. Isenberg, 58, was on a postrace high. Les Taylor, who had prostate cancer, lay flat on his back with tubes running in and out of him.

    At a loss for words, Dr. Isenberg pulled his finishers' medal from his pocket and placed it around Taylor's neck. "I want you to have this," he said. "You are running a much more difficult marathon than the one I completed."

    Before he died, Taylor told Dr. Isenberg how much he treasured the medal. Those words inspired Dr. Isenberg to start Medals4Mettle, a nonprofit organization that collects medals and donates them to people battling illnesses. As soon as the M4M Web site went live in 2005, runners from across the country responded. Not only recreational athletes, either: Olympic marathoner Brian Sell handed out his own medals at Dell's Children's Medical Center in Austin, Texas, in February.

    "It's nice to know that someone is thinking of the kids and knows what they're doing is a very brave thing," says Melissa Sexton, a child life specialist at Riley Hospital in Indianapolis. One teen, she recalls, kept his medal hanging from his IV pole.

    The adult recipients are fewer in number, but have a deeper appreciation for the sentiment behind the medals. Joann Hofer-Varela, of Westfield, Indiana, suffered a heart attack in 2004, at age 36, a week after the birth of her second child. Her cardiologist, Mary Norine Walsh, M.D., gave her a New York City Marathon medal that had been donated by M4M. "All I could do was sob," Hofer-Varela says. "It represented what I had gone through, and it represented somebody's sweat and hard work."

    Dr. Walsh, medical director of the cardiac transplant program at St. Vincent Hospital in Indianapolis, hands out about five medals a year to patients who have traveled a particularly difficult road. "I say, 'I would like to give you this medal. It's my recognition of your struggle,'" she says. "Later, my patients have told me it meant the world to them to have their doctor acknowledge how hard their battle is." The experience inspired Dr. Walsh to take up running.

    Hard-Earned Prize

    By Dr. Isenberg's guess, M4M has collected and distributed more than 3,500 medals, thanks to the efforts of a core of nine volunteers. The group is headquartered in Dr. Isenberg's Indianapolis office, where volunteers take the medals, donated from events of different distances worldwide, and attach new M4M-branded ribbons before sending them to hospitals. Dr. Isenberg devotes at least 12 hours each week to M4M, around his medical practice and his training. Since that first marathon in 2003, he has completed about 20, with a personal best of 3:30. He plans to run Chicago again in October.

    Some medals arrive with legacy cards, which detail the donor's reasons for giving away their prize. One anonymous donor attached a note to a 2008 Indianapolis Mini-Marathon medal that read: "The children who battle deadly diseases are far more deserving of this medal than I am. My son was a Riley kid who died of bone cancer. I've seen the courage of the kids at Riley, and they deserve to be honored and cured." A runner's medal might not be able to cure a disease, but as Dr. Isenberg has found, it can lift a spirit.

    Medals to Spare?

    Steven Isenberg, M.D., answers runners' most frequently asked questions about Medals4Mettle.

    Q: How do I donate a medal?

    A: "Visit medals4mettle.org for information. You can also download a legacy form and use it to explain why you've decided to donate your medal. Monetary donations are always appreciated. Our biggest cost is the new M4M ribbons."

    Q: Does my medal need to be from a marathon?

    A: "No. Someone's maximum distance they're capable of might be a 5-K or 10-K. It wouldn't be appropriate to say 'marathon only.' But I should note that the kids especially enjoy the Mickey Mouse and Donald Duck medals from the Walt Disney World Marathon and Half-Marathon."

    Q: Do you accept unused medals from race directors?

    A: "We don't take medals that haven't been earned because then the whole concept would be lost. Giving your medal is a way of saying, 'I know you're having a struggle more difficult than the one I just ran, and I'd like to express that.' It's a transference of spirit."

    Thursday, September 04, 2008

    I'm writing this while sitting next to your grave. 
    I had a doctor's appointment with my high school buddy Matt Katz this morning and then I had some time before a meeting out this way (Rockville) so I thought I'd stop by and say hello. 
    It is a very pretty day. You have 7 pennies and a big clod of dirt on your headstone. 
    It is the first time the Defender has been out to the cemetery.
    I said to Mom that driving the Defender gives me an appreciation for what it must be like to be her or any other attractive girl. When I roll by, men check it out. I was on Mass Ave yesterday and a guy in a Porsche cabriolet asked me what year the truck was. Today driving through Bethesda a guy in a brand spanking new fancy Range Rover gave me a big thumbs up.
    The leaves are falling just like raindrops (that's a line from one of my favorite songwriters, John Prine) and it is very pretty here. 
    It was really quiet until just a few minutes ago. It must be recess because I can hear the kids from the school they just built next door. It is nice to have the sound of children playing washing over this place. 
    The Batman cape in the tree next to your headstone looks a bit weathered but it is still in place. You gotta love the hands off or look the other way thinking of the groundskeepers. 
    Going to go visit Grandma's grave now. Love you. Bye.