Letters to my son.
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| Dear Henry Letters to my son. |
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Monday, July 31, 2006  When we were at St. Michaels a week ago I went on a photo safari. Here are some of the things that I found. I am especially excited that I got a picture of a hummingbird. Mom is pretty sure you are a praying mantis or come visit us as one. We have had a couple of praying mantis babies at our house.I think there is something about beautiful things in nature and feeling close to people who die. I was watching this movie called Winged Migration on our IMAX-sized TV (which I love and wish you could've seen) tonight and I kept thinking I need to come see you at the cemetery.      
posted by Allen |
Monday, July 31, 2006
Friday, July 28, 2006 How perfect are these stamps. Superheroes and super sluggers. I hope Jack likes what's in the envelopes as much as he'll like what's outside.   We can email Jack too, but I don't think that is half as much fun as getting a real letter.
posted by Allen |
Friday, July 28, 2006
Thursday, July 27, 2006 I just wrote to Jack at camp. I want to try to write to him while he is away as much as I write to you. Here is the letter I sent Jack. I typed it on my computer. I hope that isn't cheating. They have this cool software that makes your own handwriting into a font on the computer. I might invest in that. They have these great new cartoon superhero stamps and Hank Greenberg stamps. I am going to get some to use on these letters. Dear Jack: Whassup big man? How is camp? Do you like your bunk? Do they use Hebrew words for a lot of stuff? Have you been giving the waiters in the Chadar Ochel a hard time? Question: At lunch, what did Obi-Wan say to Luke? Answer: "Use the forks, Luke." What foods are you eating? Do they have peanut butter or is that not okay because kids are allergic to it? Do they have you eating scrambled eggs and stuff you don’t normally eat? Question: What is Tony Hawk's favorite cereal? Answer: Trix! Are you loving bug juice? Do they serve bug juice. That is all we drank when I went to camp. Have you made any new friends? Where are the guys in your bunk from – New York, New Jersey, Massachusetts? Did you bring your mitt? Are you getting a chance to play baseball? What other sports are there? Things are pretty much the same here at home. Joe is still squeaking and squealing. Question: What kind of animal needs oiling? Answer: A mouse, because it squeaks! He misses you a lot. He is having a sleepover at Joshua’s tonight. He is really excited. Mom and I are going out to dinner for pizza with Rich and Jill tonight. It will be weird without both of you there when we come home. Question: How do you fix a broken pizza? Answer: Tomato paste! I had lunch with Hugh today. He said Liam had a blast at camp. They are going to the beach for all of next week. I will miss him. Question: What did the Pacific Ocean say to the Atlantic Ocean? Answer: Nothing -- they just waved! Hey, are you listening to your iPod? Do the other kids have them too? Question: Where can you find 50 Cent and Eminem? Answer: In between your sofa's cushions! Remember that if there is stuff that you aren’t that great at doing (at first), like tetherball (I was awful), ask one of the counselors or an older kid for tips. People like teaching other people what they know. Keep practicing is another way to get good at something. I love you so much. All the way to Joe’s Uranus and back. Write when you get a chance. Love, Dad p.s. Mom told me she sent you a whole bunch of stuff. Is there anything else you need us to send you? posted by Allen | Thursday, July 27, 2006 Wednesday, July 26, 2006 Mom just sent me this photo of Jack. I cannot believe we got something this fast. I have one picture of me from each year at camp, and it is one that they took of all of us in our group.   Jack, of course, looks so much cooler at 9 than I was at 12. You and your brothers are just so much cooler than me and Mom. When Jack was getting ready to leave he spent a lot of time getting rid of all of the songs on his iPod that had bad words. I don't know if it was him or Mom that thought of doing that. I thought about that movie that you and I kept watching on HBO in the hotel in Minnesota just before you got really sick and had to go back in the hospital. It had all of these bad words and I thought, "who cares." I am glad you heard all of that "salty language" before you died. Made you a little more grown up. I wonder where "salty language" came to describe bad words. I bet it has something to do with the sea and sailors. Sailors were supposed to swear a lot. Here is one sailor who doesn't use "salty language."  As you can see, Joe is a "cool" sailor, and here is your dorky father. Same hat 40 years earlier. When I saw that hat, I had to go find these pictures I knew Grandma had of me. I was almost the same age as Joe.  
posted by Allen |
Wednesday, July 26, 2006
Jack left this morning for sleepaway camp for a whole month. The camp is called Camp Ramah and it is in Palmer, Massachusetts.   Aunt Jen went to Camp Ramah when she was young. This will be the longest we've ever been apart. Mom has been a little worried about that. Having lost you makes being separated from your brothers hard, though it is hard for any parent. Jack ... well he was completely psyched to go. He went on an airplane with Matthew and Sam. Mom said that when they got to the airport the boys were jumping up and down they were so excited. She also said that Jack was sharing JuJy Fruits with everyone. I really liked that detail. I wonder when he got them.  I think I was 12 before I went to sleepaway to camp. Jack is 9. He seems so young. But I guess no matter how old he gets he'll seem too young for stuff.
posted by Allen |
Wednesday, July 26, 2006
Tuesday, July 25, 2006  
posted by Allen |
Tuesday, July 25, 2006
posted by Allen |
Tuesday, July 25, 2006
 
posted by Allen |
Tuesday, July 25, 2006
Monday, July 24, 2006 I think I told you about this guy Bob Rinaldi, who found out about Hope for Henry when he was looking to do something to honor his brother, Michael, who was very sick. Bob is the guy who has worked with Mom to have pianos donated to a bunch of hospitals. Bob's brother died last week. We are going to the funeral tomorrow. Bob and his other brother Chris asked that people donate to the Hope for Henry Foundation in Michael's memory. That is very sweet of them. They've been great to us.  
posted by Allen |
Monday, July 24, 2006
Saturday, July 22, 2006 This morning Joe asked Mom and me, "How come Henry gets to be with Babe Ruth and Lou Gehrig?"  He is a funny guy. The other day Joe said that you are hiding in the bushes and when you come home you are going to kick everybody's butt. I'm ready!
posted by Allen |
Saturday, July 22, 2006
I wish they could have included a picture of you with this, but it is in part of the newspaper that is very serious. It is very serious but they still have cartoons. Kinda crazy, huh. There is a picture of you in the paper today, though. There is a magazine called Parade that comes with the newspaper. In it there is a photo of Jack holding a photo of you. There is a picture of Mom and me, too, and I look like I am sucking on a lemon. Mom said they chose that picture because they wanted one that makes us look sad. I am really proud of Mom.  Vetoing Henry By Laurie Strongin Sunday, July 23, 2006; B02 It was meant to be uplifting: President Bush, surrounded by children who had been "adopted" as embryos, vetoing a bill to permit federally funded human embryonic stem cell research. The children were meant to be props, reminders of the lives his veto would supposedly save. But all I could think about were the children who will be lost because of the politics being played by the White House and on Capitol Hill. I know, because that's what happened to my son. On Oct. 25, 1995, I gave birth to my first child, a boy my husband and I named Henry. Two weeks later, doctors determined that he had a rare genetic disease called Fanconi anemia (FA). When Henry was born, there were approximately 1,000 people with FA worldwide, and I didn't know a single one of them. I'd never even heard of the disease. But my husband and I were unknowing carriers of the gene that causes it. And so we passed FA on to Henry along with brown hair, brown eyes and dimples. Over the next seven years, I learned almost everything about FA, and none of it was good -- especially the impossible-to-accept word associated with it: fatal. Our only hope lay on the frontiers of science, in human embryo and stem cell research. That's where our desperate quest for a cure took us, even as distant policymakers placed emotionally devastating stumbling blocks in our path, obstacles that I believe may well have cost Henry his life. In almost all cases, FA leads to aplastic anemia, in which the bone marrow does not produce enough red cells, white cells or platelets. This inhibits the body's ability to fight infection, causes spontaneous bleeding and exhaustion and leads to death. The most successful treatment is a stem cell transplant, commonly known as a bone marrow transplant. In 1995, Fanconi transplant survival rates were dismal. No one with Henry's type of FA had ever survived a transplant unless the donor was a sibling. For Henry to live long enough to reach kindergarten, we would have to have a baby who did not inherit FA and was a perfect stem cell donor for him. With each pregnancy we would have an 18 percent chance of hitting those odds. It was a long shot. From the moment of Henry's diagnosis, my husband and I believed that if we made every call, pulled every string and pushed love and science to their outer limits, Henry would escape his fate. We searched for someone in the medical world who, like us, was unwilling to accept Henry's death sentence without a fight. Our search led us to Mark Hughes, then chief of reproductive and prenatal genetics at the National Institutes of Health. He had figured out a way to combine in vitro fertilization with genetic testing before an embryo is implanted. This procedure, preimplantation genetic diagnosis (PGD), involves extracting and testing a single cell from an eight-cell embryo. The results could allow us to know at the moment of conception that our next baby would avoid FA and be an ideal stem cell donor for Henry. By collecting this healthy baby's umbilical cord blood -- which is typically discarded -- at birth and transplanting the stem cells into Henry, we could save him. Hughes had used PGD to screen embryos for fatal childhood diseases such as cystic fibrosis. But neither he nor anyone else had ever used PGD to save the life of a child already born. When we began quietly pursuing PGD a decade ago, it was not on the national news or featured in fertility clinic advertisements. It was somewhere between a hope and a dream shared by a small group of doctors and families. But on Jan. 9, 1997, an article in The Washington Post reported that Hughes was violating a two-year-old federal ban on human embryo research with his work on PGD. Under the ban, Hughes was barred from performing that work as part of his position at NIH. Refusing to abandon his research or the families who were depending on it, he set up a lab as part of an in vitro fertility program at a private hospital across the street in Bethesda. But he was considered in violation of the federal law because his work at the hospital employed NIH research fellows and used NIH equipment -- a refrigerator. Over the following weeks, the daily headlines all read the same to me: Henry is going to die. As our doctor was forced to resign from his job and faced congressional hearings, Henry's blood counts declined. We searched for alternatives to PGD, but none existed. The politically triggered delay had stolen precious time in our race to save Henry's life. On Dec. 11, 2002, he died in my arms. There were nearly 100 embryos left over from our PGD attempts. Many had Fanconi anemia. All were precious. After we unsuccessfully attempted to use a number of them to have another baby, it became clear to us that they are not potential life, but lifesavers. So we signed consent forms donating our remaining embryos to be used in research that would provide hope and answers for other couples. Hospitals are filled with children whose lives depend on medical advances that hold the promise of stalling or even reversing fatal disease. During last week's ceremony in the White House East Room, Bush justified his veto by saying that the bill "would support the taking of innocent human life." But the East Room isn't big enough for all the additional innocent lives that will be lost as a result of his decision. lstrongin@starpower.net Laurie Strongin is the founder of the Hope for Henry Foundation. © 2006 The Washington Post Company
posted by Allen |
Saturday, July 22, 2006
Thursday, July 20, 2006 This was our vacation. I'll tell you more about it later, but it was pretty much the usual...              
posted by Allen |
Thursday, July 20, 2006
Tuesday, July 18, 2006 We are on vacation in Rehoboth. The lifeguards told everyone to get out of the water, and I thought it was because of the giant-sized jellyfish that were floating in.  Mom took a picture of one that washed ashore. But then someone said something about a shark and I looked out and there it was. I saw a fin cruising around right near the shore and then it disappeared. Unfortunately, by the time Jack, Joe and Mom got up to the water's edge the shark wasn't showing anyone his fin anymore. This was the only other shark sighting on the beach.  I went back in the water after the lifeguards said it was okay. I have seen it a million times on TV but this was totally different. It was a little freaky and scary, but mostly cool.  Rehoboth Beach Clears After Reports Of Shark Sighting By WMDT STAFF -- WMDT 7/17/2006 Rehoboth Beach Patrol cleared the waters on Sunday after reports of sharks in the water. Officials say it could have been a sand shark, a skate or a ray. Captain Kent Buckson says they get sightings at least a couple of times a summer. "We're going to be proactive and protect the public and pull them out for an extended period of time until we feel confident enough that whatever it was, sharks, skates or rays have moved on," Buckson said. Buckson says if you see any kind of marine life in the water to remain calm and tell a lifeguard. Portions of this story copyright —2006 by The Associated Press.
posted by Allen |
Tuesday, July 18, 2006
Monday, July 17, 2006  "Wiz" kid A rare disease couldn't keep Molly Nash from being born for the stage By John Moore Denver Post Theater Critic When little Molly Nash recently auditioned for "The Wiz," she belted out her favorite song as if her life depended on it. At one time, it did. "Five hundred twenty-five thousand six hundred minutes: How do you measure a year in the life?" For the Nash family, nothing measures the year following Molly's landmark, life-saving blood transfusion in 2000 like the theme song from "Rent." "What that song means to me is that when I was really sick and in the hospital, my parents were counting every minute and every second we had together," said Molly, who turned 12 on July 4. Molly's parents are Jack and Lisa Nash of Greenwood Village, who set medical history by the way they saved their daughter's life six years ago. Then they had to wait out another 525,600 agonizing minutes of recovery in a sterile isolation unit before learning that Molly would, indeed, survive. "Time goes on for the world, but time stood still for us," said Lisa. "They say if you can make it through that first year, then you have a chance. But kids were dying all over that transplant unit. So 525,600 minutes? Yeah. I can tell you every single minute of that year." Molly was born with Fanconi anemia, a rare and deadly genetic disease that prevented her from creating healthy bone marrow, which led to the onset of leukemia. By age 6, Molly lay near death. Her last best chance for survival was infused stem cells from the placenta of a nonexistent sibling. The Nashes always wanted more kids but had feared passing on the disease to more children. Even if they were to conceive naturally now, the odds were 1 in 4 the child would have the Fanconi gene, and it would be four months before they would know for sure. That was time Molly might not have, so they underwent selective genetic testing and in-vitro fertilization to produce a healthy match. After the seventh attempt, brother Adam was born, and Molly was saved. Three years layer, sister Delaine joined the growing brood. "When Molly went to transplant, she didn't have much time left," Lisa said. "At Adam's circumcision, she was gray, and she had to be carried down the aisle of the synagogue because she could not walk." The use of umbilical-cord blood to save a life was not new. But Adam is believed to be the first donor ever selected and cleared while still an embryo. Because of the worldwide attention that followed, perhaps it's no surprise that Molly now says, "I was born for the stage." She's been on a worldwide stage of sorts her entire life. Adam to the rescue Five-year-old Adam bounds down the stairs of the Nash home and into your lap enthusing, "Guess who made Molly healthy?"' Then he flashes a small framed picture of himself. "I'm guessing it's ... Adam?" "It's me!" the boy says with glee. "I gave her the blood that I didn't need!" His mom says, "Adam, if you were a peacock, your feathers would be out to here." Within seconds he's entirely refocused on his "Monster Garage" video. Ah, 5-year-olds. Molly was sick and Adam helped make her better: That's the sum total of what her children know, Lisa said. Otherwise, their sibling rivalry and revelry are textbook typical. "She's the best sister in the whole world," Adam says almost too sweetly. But Molly knows the score. "He's good," she says, "but he can be annoying. He pulled my hair this morning." In time, the pair will learn what all those boxes of press clippings in the basement are all about. They tell the story of a quiet young couple thrust into a worldwide spotlight for choosing to use existing technology to save their child's life. When Molly was 6, Pre-implementation Genetic Diagnosis (PGD) was more science fiction than science to the Nashes. In it they saw not controversy, only hope - the birth of a second child would more than triple Molly's chances of survival. Lisa has heard all the arguments about playing God with genetics, but she defies any parent to not try the same thing in her position. "I just say don't judge anybody until you've been standing in their shoes." After six failed in-vitro attempts, Lisa's shoes were quaking with fear. With Molly's time growing short, her doctor advised taking their greatly reduced chances on a nonrelated Molly Nash, right, is seen during dress rehearsal at the Space Theatre at the Denver Performing Arts Complex. She plays one of four Munchkins. (Post / Helen H. Richardson) donor. But with so many kids dying on that route, Lisa opted for one last in-vitro try. Time was of the essence, and the stakes could not have been higher. "When you go to Vegas, you know you are going to lose money. That's gambling," Lisa said. "Here we were gambling with her life. And it wasn't a few hundred bucks we would be losing. We would be losing our kids." Lisa was told she was pregnant on Christmas Eve, but she didn't believe it. "I told the nurse, 'You just don't want to hurt me because I'll have a rotten Christmas Eve, but it's OK because I'm Jewish,"' she said. Still not convinced, Lisa wrapped Molly like a mummy and drove to Target, where five pregnancy tests confirmed it. "I'm watching it turn positive, one after the other, and I'm screaming in the stall," Lisa said. "You laugh," Jack added. "I still have to live with these things." He's not kidding. "I still have those pregnancy tests up in my closet," Lisa said. Little did the family know, though, that their private godsend would soon become a public moral debate. After Adam's birth, photographers climbed trees outside the University of Minnesota Hospital to get pictures of the kids in the transplant room. The Nashes received a letter from the Vatican excommunicating them from the Catholic Church. "I mean, does that really mean anything ... when you're Jewish?" Lisa can now say with a laugh. "When Jack and I were making this decision, we didn't do it for the world's approval. It was to save our family. More than that, it was to have a family, a healthy family. And then the world decided they were going to take issue with what we did?" Jack, the general manager of the Hampton Inn and Suites, said while "we obviously used the technology to save Molly, the real reason was so we could have other kids." As for the religious debate over stem-cell harvesting, Lisa emphasizes that Adam was never needled in any way. "After he was born, they took blood from his placenta, which they usually throw out," she said. Added Jack: "We should have gotten a rebate because we recycled!"  One happy munchkin When Adam says, "My sister is a blue-haired munchkin," he's not being a bratty brother. Molly is playing just that in "The Wiz" for the esteemed handicapped theater group called PHAMALy. "When I found out I got in, I screamed my head off," she said. "I was so happy." PHAMALy enables people with disabilities to perform in a professional annual summer musical at the Denver Performing Arts Complex. "These people have all been through so much," said Lisa. "They have been through car accidents and Parkinson's and leukemia and bone-marrow transplants. They all deserve happy times. Well, these are the happy times. They all deserve to shine and to have their moment." Molly has sat in PHAMALy's audience the past four years, wanting nothing more than to be on stage with them. "I think it's really neat," she says, "because I finally get to do something." Lisa says Molly has always thought of herself as a little different, "but she's no longer different here," she said. "Nobody is. Yes, they have physical challenges. But among them here, they are all whole. And they are all perfect." To notice what's wrong with Molly, you first have to get past that sweet toothy smile and that cackling laugh. It's that laugh, and her compartmentalized size, that got Molly cast as a munchkin in the first place. With Molly wriggling in her lap, Lisa counts off five birth defects before she even leaves Molly's head. In all, she has "close to 20 birth defects," Lisa says. "That's all I can think of today." Molly asks, "What are birth defects?" "They are the things that make you special," her mom says. But unlike leukemia, they are nothing this family can't live with. Molly was just 2 when a neighbor kid let her tag along at a dance class taught by PHAMALy choreographer Debbie Stark. "In walks this precious girl wearing a mask that covered her entire face," said Stark. "She came in the door and announced, 'I'm here today.' I fell in love right then and there. That became the motto for her whole life: 'I'm here today."' Because Molly was susceptible to infection,  The entire Nash family sits together in the family living room. They are, from left: Adam, Lisa, Delaine, Jack and Molly. (Post / Helen H. Richardson) she could not take classes with other kids. So Stark would lock up her studio, and the two would dance there together for hours. Four years later, Stark became Adam's godmother. She still takes Molly to see theater all over town. Molly especially loves the Country Dinner Playhouse, where she saw "Grease" six times and developed a crush on a boy "who turned out to be a poophead." Ever since Molly was born, she says, "My dream was to do a show with Debbie." And so with "The Wiz," "now I got my dream come true." The night before, the company had a 12-hour rehearsal that ended at 11 p.m. Everyone was exhausted - but not Molly. She said to Stark, "Do we really have to leave now?" The theater community hosted a benefit in 2000 called "A Moment for Molly," where she was presented a silver-balled necklace that belonged to 'N Sync's Chris Kirkpatrick. Months before, "Buzz" Reifman, Denver's "doctor to the stars," arranged for Molly to meet her idols backstage at a concert. Kirkpatrick said, "I like your pony tail," and Molly said back, "I like your necklace." Kirkpatrick moved Molly's family to the front row, and he sang "God Must Have Spent a Little More Time on You" directly to her. "Some girls in back of us thought he was singing to them, but he said, no, he was singing to me," Molly beamed. Kirkpatrick sent a recorded message to Molly's benefit. When he said, "I have a little present for you," Reifman produced the necklace Molly had so admired. She's since been offered $10,000 for it, but Molly's not selling it - "not ever." An uncertain future Molly's prognosis is unclear, because there are only about 300 people in the world with Fanconi. What her parents do know is that she is extremely susceptible to several cancers. They also know that Molly's transfusion bought them time. Time for her to meet her brother and sister. To develop mad crushes on boys and a passion for dance. To find a cure for cancer. Time to soon become a teenager, something that seemed impossible at birth, when doctors predicted she would die by 7.  "There was a really strong possibility that there was never going to be an Adam, and there was a chance that, God forbid, there was never going to be a Molly beyond a certain age," Lisa said. "But through this technology, we have a family. And our kids are going to all grow up together, and they are going to outlive me. So it's a miracle. "Yes, it stinks that Molly was born with a disease, but I don't think of it as a punishment because God gave me my Molly - for good and for bad, and for her challenges. And I wouldn't have switched her for any other baby." "Thank you momma," Molly says before giggling like a blue-haired munchkin. Theater critic John Moore can be reached at 303-820-1056 or jmoore@denverpost.com.
posted by Allen |
Monday, July 17, 2006
Thursday, July 13, 2006 I try to work your name into conversations. I try to be really natural about it, but I totally know that I am doing it on purpose. The other day a friend was showing me a picture of his kid at the Reston Zoo. I then said, "Oh yeah, Henry and Laurie got to ride an elephant there." I am totally thinking about the fact that I am saying your name when I am saying your name. I am going to keep doing that.
posted by Allen |
Thursday, July 13, 2006
I just cried for the third time in four days today. I am glad we are going on vacation next week. On Sunday, we went to Papa Teddy's and that was hard. Then it got even harder as we watched ESPN and they had a segment on a boy whose Make A Wish wish was to be a coach for the day with the Philadelphia Eagles. I had to walk away. I couldn't take it. Then yesterday, Mommy and Debbie Blum and I went to Children's Hospital in Philadelphia and together with these really nice people from a place called Jacobs Music gave a totally cool piano to the clinic there. Two of the guys from Jacobs music are brothers who are about to lose their other brother to cancer. That is part of the reason they are helping Hope for Henry Foundation. He is supposed to die any day now.    There was a boy in the music therapy room who was you. I watched him walk unsteadily into the room holding his mom's hand, and saw you walking down the hall in the clinic in Minnesota for the neurologist who wanted to check the neuropathy you had from the steroids and GVH. Or maybe it was after your brain surgery. I can't remember which. I couldn't take my eyes off this kid. Unfortunately, he was you when you were not in a good mood. And I know that a lot of that bad mood is because of all of the steroids. His name was Matthew. There were too many people in the room and just too much activity. He seemed okay before we all crowded in. But with all of the commotion he just kept his chin against his chest and stared downward. It reminded me of when Superman came to visit you in your room at Hackensack. You wanted nothing to do with him. I felt bad on so many levels.   That head of hair definitely looked familiar.  Everyone was very happy about the piano, but I just wanted to take Matthew away from that room and hug him. Luckily, he got off the piano bench after a while and just buried himself against his mom and then he walked off with his dad. Which takes me to 5 minutes ago when I watched this video about another Matthew. I know Matthew's parents and they are really, really good people. Going through this once is enough. I cannot even imagine. It is interesting to see Dr. MacMillan. I wonder if she is still running. I remember that she runs marathons. The shot of the Mississippi is right where Jack and I went down and skipped stones. Joe and I did that on Saturday at Seneca Creek Park after we dropped Jack off at Shadowlands.   Matthew Pearl Prepares For Bone Marrow Transplant; Teammates In Eureka Show Their Support Minneapolis, Minnesota, where the calm of the water is overshadowed by sleepless hours for a St. Louis County family. The University Of Minnesota Hospital-Fairview is a leader in the fight against Fanconi Anemia, a rare and vicious blood disorder that has left 9 year old Matthew Pearl fighting for his life. His mother Diane said, "The medicine is like drinking Drano. It kills all the cells, and the cells are so sensitive at your mouth and bottom areas. That's the first place you start getting sore." To prepare for transplant, Matthew is receiving transfusions which eliminate his immune system. "What's difficult about Fanconi Anemia is they don't repair their DNA well. So if you give them chemotherapy or radiation they can get really sick," according to Dr. Margaret MacMillan of the marrow transplant program in Minnesota. "In general, you give them a fifth of what you give a normal patient." The side effects are excruciating. The pain is so unbearable at times that not even a mother's touch can make it go away. This is the second time the Pearl family has undergone this kind of suffering. Daughter Alex underwent a bone marrow transplant for the same disorder five years ago. Her mother said, "Unfortunately, it gets worse before it gets better." Matthew's father, Mark, is also at his bedside. Fighting back tears, Mark said, "When he's resting comfortably we've had some tremendous father-son time. While the Pearl family prepares for Friday's bone marrow transplant, Matthew's friends are doing their part to show how much they care about him. At home in Eureka, Matthew's baseball team skipped practice on Wednesday. Instead, they spent the evening shaving their heads in his honor. Matthew will likely lose his hair due to chemotherapy and radiation. His teammates figured he shouldn't be bald alone. Of course, that didn't make going under the blade any easier. Ford Viehman says, "I've been growing it out all summer and now I've got to get rid of it." Eli Schmidt says, "I just got this mohawk about a week ago, and I really don't want to lose it." But they're prepared to make the necessary sacrifice, in honor of their good friend. Collin Fischer says, "He's like a brother to me. A brother from another mother." The kids' coach couldn't be more proud. In fact, he thought it was such a good idea, he got his head shaved, too. He says, " We didn't push the kids and say this would be a neat thing to do. The kids said hey we want to do this for Matt." The haircuts and the hysterics were all caught on tape. The team will mail it overnight to Matthew. They can't wait to hear his reaction. Collin Fischer says, "He's probably not going to say anything. He's just gonig to laugh his head off." But more than anything, his newly bald teammates want to make sure Matthew gets their message. Fischer says, "That we're all with him and good luck." His friends know Matthew has a difficult road ahead. They hope their support and their gesture will make him smile in the coming months.
posted by Allen |
Thursday, July 13, 2006
Woke up to this story this morning on the TV. He must be in the same class as Jacob and Joey. Hard to believe they are 7. That is how old you were when you died. Jack used to go to camp at the JCC. He did it the summer after you died. We just told Joe this weekend how we used to live right behind the JCC (and the pool where this boy died). I feel so bad for the family. They are in shock now. They have a rough road ahead. From: parents-owner@mail.jpds.org [mailto:parents-owner@mail.jpds.org] On Behalf Of Naomi Reem Sent: Thursday, July 13, 2006 2:23 PM To: staff@jpds.org; parents@jpds.org Subject: [parents] Sad news from the JCCGW and CESJDS Dear JPDS community, The attached email came from Charles E. Smith JDS, following an email from the JCCGW, which informed the community of the death of a camper, Elie Scott, a CESJDS student, at the JCCGW summer camp yesterday, following a medical incident at the pool. Many of our families may have connections to the Scott – Fishman family, a long established family in the community. Some of our students are at the JCCGW camp as well. Please let us know if your family is connected in any way to this tragedy, as we may expect that children who knew Elie or know of what happened may need some support when the school year starts. The funeral information is attached and shiva information will be forwarded as well as it becomes available. May God grant comfort to Elie’s family and friends, and to the JDS and JCCGW communities. Naomi “It is with great sadness that we write to inform you of the sudden and tragic passing, yesterday, of Elie Scott, son of Russell and Sarit (Fishman, class of 86) Scott, who just completed 1st grade at CESJDS. Our thoughts and prayers are with Russell, Sarit and their entire family. The funeral will take place on Friday, July 14 at 10:00 am. at Danzansky-Goldberg Memorial Chapel, 1170 Rockville Pike, Rockville. Information on Shiva will follow. May his memory be for a blessing and may the family be comforted among the mourners of Zion and Jerusalem.” Boy Who Died at Camp Pool Identified By Ernesto Londoño Washington Post Staff Writer Thursday, July 13, 2006 Montgomery County police today identified the 7-year-old boy who died yesterday after being rescued from a swimming pool at the Jewish Community Center in Rockville as Elie R. Scott. The child, who lived in Rockville, was pulled from a section of the pool that was four feet deep about 11 a.m., police said. "As the lifeguards were scanning the activity in the pool, they observed that a child was under water at the bottom of the pool," police said in a news release yesterday. "It is believed the child was spotted very quickly." A lifeguard dove in and pulled out the boy, police said. Paramedics reached the center, at 6125 Montrose Rd., within minutes and found the child "in full cardiac arrest," said Lt. Dorcus Howard Richards, a spokeswoman for the county's fire and rescue service. Elie was taken to a nearby hospital, where he was pronounced dead yesterday afternoon, police said. Police said he was one of five children participating in a swim class with an instructor. There were also two lifeguards supervising the 15 to 20 children who were in the pool at the time. Elie was a student at the Charles E. Smith Jewish Day School, which is near the center. School Head Jonathan Cannon declined to comment last night. Officer Rodney Barnes, a police spokesman, said yesterday that he didn't know whether the child had any health problems that might have contributed to his death. Elie's body was taken to Maryland's Office of the Chief Medical Examiner in Baltimore, where an autopsy will be conducted to determine the cause of death. Jewish Community Center officials said in a statement that crisis response workers from the Jewish Social Service Agency and the county's crisis center are offering support to staff members at the camp. "While we all share the grief of this family, camp will continue tomorrow as scheduled," officials said in the statement.
posted by Allen |
Thursday, July 13, 2006
Friday, July 07, 2006 We went to see the Nationals play the Padres. When I ask Joe who he wants to win -- not just this game but any game -- he tells me, "Whoever wins, I want to win." I guess he is covering his bases with that. I can't wait for him to say, "the Nationals," or "the Redskins." That will happen some day.  "Screech" is the National's mascot. He came by and visited us where we are sitting. The view from our seats is pretty darn nice. We are right down a row off the field. We had seats like that once when you and your brothers went to see the Orioles with Mom and me. You guys are spoiled that way -- which isn't a terrible thing. We are very lucky.  
posted by Allen |
Friday, July 07, 2006
Thursday, July 06, 2006 Today was supposed to be your "other" birthday. I can't believe it has been 6 years. You were only 7 when you died. Sometimes I want time to go fast. Other times I want it to slow down.  You looked like I felt. That you had a long life ahead and this was just the start. I was in Chicago today. I wish I hadn't been away from home. I felt awful. This should have been a happy day. I was driving away from the airport in Chicago and I saw a hotel and it made me think of the hotel we stayed in when we first got to Minneapolis. It wasn't that nice. Do you remember that funky indoor pool.  I also went by the Nike store on Michigan Avenue. Remember how we saw the soccer players from the DC United team there. That was cool. And I also remember how gas was $2. That seemed insane. Speaking of soccer, there is a big soccer tournament going on right now called the World Cup. I want France to win. They have a "striker" named Thierry Henry. Can you believe that - Simon's dad and you together. Susan, Simon and Alex are heading over to France. I want to see if they can bring back a Henry jersey for Jack and Joe. Joe is wearing your French soccer shorts that Nana bought you in France. I don't know where the jersey is.   I have these moments lately where I just think to myself that you can't be dead. It seems impossible. I'm glad that I have those feelings. This is an email Mommy sent out on the day of your transplant. The Transplant - Dwell in Possibility To: Friends of Henry Date: July 06, 2000 3:07 PM From: Laurie Strongin Subject: Henry's Bone Marrow Transplant is Today As I sit, unable to sleep, reading silly magazines that don't challenge the mind to do more than pass the time, I notice on Martha Stewart's calendar that on Thursday, July 6, she is scheduled to "Clean freezer and refrigerator." On Henry's calendar for today, Thursday, July 6, the word "Transplant" appears. Just one word with so much potential. Somewhere in the world, our donor's calendar reads something equally meaningful. Oh, how I long to spend a day inspecting the "use by" dates on the food in our fridge. Henry has just more than endured a day of radiation followed by four days of chemotherapy. His doctors are very satisfied with his progress which is all that we need to feel good so far. The really bad times are few and far between right now and we have managed to turn his room into a playroom featuring a basketball hoop, punching bag (see attachment) and Pokemon and Michael Jordan posters. Henry is covered in Pokemon tattoos and celebrates his daily accomplishments -- even being able to stand up all by himself. This is a far cry from scoring two goals at soccer, but equally impressive. The doctors and nurses here treat him so well. I suspect they find him as charming as the rest of us do. Today is considered Day 0 of Henry's new life and the hope is that by Day 21 (near the end of July), the new bone marrow will engraft and Henry will be on the road to recovery. His doctor describes the transplant as seeding a garden and hoping it will grow. Perhaps we could use a little Martha Stewart right now. Home seems far away from here, but folks here are being so kind to us. July 4th was spent at the home of good friends here (except Henry and me who are holding down the fort on Unit 4A). We did our part by listening to patriotic music, including Henry's favorite, "Goober Peas." I remember getting a kick out of that one too, way back when. Brother Jack is happy in camp and is making friends. He has just spent a few days with cousins Emma and Sam, following a visit from Aunt Abby, and Aunt Jen, Uncle Dan and Hannah. So between that and lots of attention from my mom and Allen and me, he is doing just great. Thanks to all of your letters, emails and support. We couldn't do this with you.
posted by Allen |
Thursday, July 06, 2006
Wednesday, July 05, 2006 We went to St. Michaels for the Fourth of July. Papa Sy helped Uncle Peter bring his new boat down from Maine. It was all pretty perfect.   
posted by Allen |
Wednesday, July 05, 2006
I wonder why Fanconi patients are often really good athletes. I told you about the boy who was in the Punt, Pass and Kick competition at RFK. I know that the Frohnmayers kids are all great athletes. And there was you.  Bradenton brothers with rare blood disorder await 'miracle' DONNA WRIGHT Herald Staff Writer BRADENTON - To look at Anthony Negrin, one would never suspect the 16-year-old Bradenton boy with the muscle tone and grace of a born athlete is fighting for his life.  Roxanne Negrin and her son, Anthony, 16, are surrounded by information about Anthony's illness on the table in front of them, and family photos on the wall behind them. Anthony has a rare disease which requires a bone marrow transplant. But his bone marrow can no longer make red blood cells. Negrin has Fanconi anemia - a blood disorder so rare that only 10 to 20 children each year in the United States are diagnosed with the genetic mutation. Until recently, Negrin had no problems, but then, for reasons his doctors cannot explain, his bone marrow stopped producing the cells vital to distributing oxygen throughout his body. If it weren't for regular transfusions, Negrin's red blood count would drop so dangerously low that his life would be threatened. Now, Negrin's future hangs on finding a bone marrow donor. An international search is under way to find the perfect match. That match, says Negrin's mother, Roxanne, must have at least seven and preferably eight of the same 10 genes as Anthony has in his blood. The Negrins thought their prayers were answered when preliminary tests showed that Anthony's younger brother, Jonathan, was a perfect 10 to 10 match - an almost unheard-of possibility. But their hopes were dashed when subsequent tests to prepare for the transplant procedure revealed that Jonathan also has Fanconi anemia, or FA. So far, Jonathan's bone marrow is producing red blood cells, his mother said. But doctors have told the family that Jonathan's red blood cells could dramatically drop - and they can't predict why or when. Then Jonathan, too, would need a bone marrow transplant. Inherited disorder Life for the Negrins has been turned upside down since learning two of their four sons have FA. But their optimism has not wavered, sustained by a deep faith and the support of their friends and the boys' teachers at Bradenton Christian School, who help the family navigate the mind-numbing complexities of dealing with their sons' serious medical conditions. The Negrins' story really begins years ago when Roxanne walked into a tiny Cuban restaurant in Miami with her mother. Roxanne took one look at the handsome man in the tiny kitchen window and grabbed her mother's arm. "That's the man I am going to marry," Roxanne said. "He doesn't know it yet, but we are going to get married." Six months later, Sergio and Roxanne Negrin tied the knot. It would have been sooner, Roxanne said, but they had to wait on an open date for a church wedding. Little did the happy couple know that their union would join more than love. FA is an inherited disorder. For it to be passed from one generation to the next, both parents must carry a mutated FA gene. Even when that rare genetic combination occurs, the couple's children have just a 1-in-4 chance of developing the disease. "What are the odds," Roxanne asked, "that I would pick a guy who had the same defective gene as me?" Refusing to be pessimistic about their fate, Sergio jokes that what united them was the Fanconi Anemia Attraction. United in their struggle, the sobering diagnosis has strengthened the family even more. The Negrins feel blessed to have discovered the problem in time to do something about it. Unlike most children afflicted with FA, brothers Anthony and Jonathan have been very healthy their entire lives and are still free of symptoms. Avid athletes, they master every sport they try, their mother said. Typically, FA shows up in early childhood. Many patients develop acute myelogenous leukemia, according to the Fanconi Anemia Research Fund. Anthony is not troubled by his FA diagnosis. Instead, he sees it as a sign, almost a mission. "I feel I have been blessed," he said. "I think I have this disorder so I can bring people to Christ. I have already brought others to Christ because there are people praying for me who have never been to church before." "We are waiting for a miracle," his mother said. "We know a miracle will come." The signs may have already occurred, beginning with the events that led up to Anthony's diagnosis. Fate intervenes Last month, Anthony tried out for the tennis team at BCS. While signing up, Dawn Cotrone, the mother of one of Anthony's friends, pulled him aside. Cotrone had been taking care of her sister who had been diagnosed with a rare form of anemia. She knew how to spot the subtle signs. Even though Anthony looked perfectly healthy, Cotrone noticed a certain cast to his skin that she thought should be checked out by a doctor. "I blew off her concern," said Roxanne, who shares the same olive skin tone as her son. But then one day Anthony and his friends stopped by South Philly Cheese Steak restaurant on 34th Street West. Anthony had no more than walked through the door, when a stranger walked up to him. "Excuse me," the woman said. "But you need to tell your mother to take you to the doctor. You are anemic." At first, the family laughed about the coincidence. But today the Negrins would love to find that woman to thank her for spurring them to action. The Negrins called pediatrician Dr. Frank Davis, who had taken care of their boys for years. The warnings from Cotrone and the stranger proved correct when blood test results showed that Anthony's red blood count had dropped to 4.1, his mother said. A normal reading should be around 14. "Dr. Davis could not believe it at first," Roxanne said. He couldn't believe Anthony's count could be so low without the telltale signs - throwing up, fainting, nausea and dizziness. But although Anthony seemed fine, his doctor knew he wasn't. He ordered the Negrins to take their son immediately to All Children's Hospital in St. Petersburg. There, all of the tests for the most likely problems - including leukemia and aplastic anemia - came back negative, Roxanne said. As a last resort, the All Children's team considered FA, even though Anthony showed no symptoms. But there was one final clue to be investigated - children born with defective FA genes are often born with double thumbs on one or both hands. At birth, Anthony's right hand had a double thumb, a tiny protuberance that was removed while he was an infant. Absent other symptoms, the doctor who delivered him never suspected the double thumb could indicate a serious medical condition, Roxanne said. The news that Anthony had FA stunned the Negrins. Friends from BCS - Evelyn Magley, Lisa Judge and Judy Barber - flew into action, culling the Internet for information on FA and finding resources to help the family deal with the challenges ahead. Magley called an FA hotline and got the names of the three specialists in the United States who know how to treat the disease. The Negrins left messages with all three, even though it was Memorial Day weekend. Dr. Richard E. Harris of Cincinnati Children's Hospital returned the call immediately, even though he was on a scouting trip with his son. Within 24 hours, the Negrins had an information packet sent by overnight courier to Bradenton and an appointment with Harris, who began blood tests to see if one of the family members could be a donor match for Anthony. When the match with Jonathan was found, Roxanne, Sergio, Anthony and Jonathan flew to Cincinnati for more than four days of preliminary tests and procedures. Now that his brother Jonathan has also been diagnosed with the disorder, those preparations must be done again once a new donor is found. Then a another trip north will be necessary for the bone marrow transplant, which will require the Negrins to stay in Cincinnati for three months during the recovery period. The challenges don't end with a successful bone marrow transplant. Anthony faces several months of recovery once he returns home. His parents face the challenge of making their house as antiseptically clean as possible to ward off any exposure that could prove disastrous for Anthony, whose immune system will be compromised. But through it all, Roxanne has not given up hope. Her husband, Sergio, she said, is the family's anchor. Her son, Anthony, the optimist who helps her cope. "My Anthony charges me up like a little wind-up doll," she said. "Whenever I get down, he tells me, 'Come on Mom, God already knows who that donor is.'" Donna Wright, health and social services reporter, can be reached at 745-7049 or at dwright@HeraldToday.com. Bone marrow donation To register to become a donor, contact the National Bone Marrow Donation Program at (800) 627-7692. What is Fanconi anemia? Fanconi anemia is one of the inherited anemias that leads to bone marrow failure (aplastic anemia). It is a recessive disorder, meaning if both parents carry a defect (mutation) in the same FA gene, each of their children has a 25 percent chance of inheriting the defective gene. When this happens, the child will have FA. Extremely rare, FA is diagnosed in only 10 to 20 children in the United States each year. FA occurs equally in males and females. It is found in all ethnic groups. Though considered primarily a blood disease, it can affect all systems of the body. Many patients eventually develop acute myelogenous leukemia at a very early age. FA patients are extremely likely to develop head and neck, gynecological and/or gastrointestinal squamous cell carcinomas, again at a much earlier age than in squamous cell carcinoma patients in the general population. Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problem associated with FA, still must have regular examinations to watch for signs of cancer. -------------------------------------------------------------------------------- © 2006 Bradenton Herald and wire service sources. All Rights Reserved. http://www.centredaily.com
posted by Allen |
Wednesday, July 05, 2006
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