EVELYN HOWELL/HERALD STAFF WRITER

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.

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

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?

Gone too long; Three decades later, former campers get together

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 sports@midlothianexchange.com 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 café 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 golf, have dinner or see more photos from the climb.

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.

MADE OF METTLE

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."

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.

Tonight was a great night. 

Joe is playing on two baseball teams this fall - and a football team. He is playing for the Cap Cities Little League Pirates, the same team he's been on for 2 or 3 years now, and we also signed him up for Northwest Little League. 

I was so psyched when I got an email from Joe's coach today introducing himself and instructing the parents to pick up the uniforms at his house, which isn't far from here. 

I was psyched because the Northwest Little League team is the Yankees, Joe's favorite Major League team. He already has so many Yankee shirts and posters and stuff that wearing the uniform would be the cheese on top of spaghetti. Normally you say the icing on the cake or the cherry on top of a sundae, but Joe's favorite food for the past few months has been spaghetti with cheese on top. He eats it for dinner almost every single night now. Actually, he hardly eats any of the spaghetti; he just piles cheese on the top and eats that off. When I try to mix it all in he gets mad at me. That brother of yours is a little nutty at times. Oh yeah, I forgot one other thing. He calls the cheese "sugar." 

So when I got home from work I told Joe that we had to go on a quick mission. I wasn't telling him where we were going but explained he wouldn't be disappointed. 

Little did I know that he had already picked this night as the night he would finally learn to ride a bike. I asked him to give me just five minutes for the surprise and then I'd deliver him back home to Mom for the inaugural bike ride. 

When we got to the coach's house I told Joe we were just going to the door to pick up something and then head back home. After years of being too scared to ride, Joe - this afternoon - decided enough was enough and was going to get it over with. I didn't want him to lose the courage he had worked so hard to build up. Actually, what might have pushed him over the edge was your 4 year-old cousin Noah, who just learned to ride. 

Uncle Andy sent us a picture of Noah outside of their new house in London. I showed it to Joe to spark that sense of competition (and maybe a little shame) that burns so fiercely inside him. 

So when we rang the bell at the coach's house, I was surprised to see the door opened up by an old friend of mine. It was Monica, a woman I knew really well 20 years ago. We were part of a big group of friends who lived right around here who went out all the time to parties and stuff like that. 

I hadn't seen her in years. More than 6 years it turned out because when Joe and I walked in (the coach, Monica's husband, hadn't gotten home yet with the uniforms so the "quick stop" was out of the question) Monica asked me how my other son, the one who was sick, was doing. I told her very matter of factly - which means I didn't cry and my face didn't scrunch up - that you had died. She was very sorry. 

Steve, her husband and Joe's coach, walked in a few minutes later after we got a chance to meet their kids who are really great. Joe was able to pick a number he wanted and we grabbed a hat and headed home. 

The second we got back Mom and Joe went straight over to Stoddert with your old Pokemon bike. Your first two-wheeler. Joe got on, Mom pushed, and he was off. Being almost 7 years old and pretty athletic helps when you are learning to ride a bike. It didn't seem as much learning as just finally doing.

Joe rode and rode around the bases - of course - like a champ. Then some other neighborhood kids came over and rode on the field with him. In true Joe fashion, he didn't want to stop riding. 

I can't wait to get to St. Michaels so we can all ride to town. I only wish Joe had gotten the courage up to do this a month earlier so he could have rode a bike with everyone else at the beach. 

I guess really knowing how to swim is next. He is so close. 

Jack came into our room at 6 am this morning. I thought that he was sick or something because he never, ever wakes up early. 

He said that he had a dream and woke up. He went back to sleep with Mom for a little while and I went downstairs. 

He told us that in the dream he didn't know where he was but he was with a bunch of people. Then he had a letter and on the letter was an image. In the dream, Mom and I asked him to copy the image on to a piece of paper. 

Then there was a large staircase and he climbed up. He said he went up into heaven and you were there. 

You and Jack were hanging out and then he woke up. 

The word he used when describing the dream was "disappointed."

Jack was disappointed because he felt so close to you, that you were actually together and then he woke up and you were gone. 

I will put this in the letters I am now writing to him online. I think he'll want to know and hopefully remember that he had this dream later on in life. 

Debbie just showed this to Mom.

http://www.flashesofhope.org/



What a great idea. Professional photographers take pictures of kids with cancer. I think I may have told you that Norman got in touch with us a month ago or so and said he has more photos of you he is going to give to us. 

I wish I knew about this organization way back when. I don't know how long they've been around.

Coincidentally, John Donvan was over this weekend showing us a video he is creating for Hope for Henry.

Sadly, there are a few kids in the video who have died since it was shot.

John has an incredibly sweet idea of putting all the video that was shot of these kids on separate DVDs and getting it to their parents.

I know how much having any more video of you would mean to me.

Praying for a miracle

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Lucas and baby Owen suffer from a rare blood disorder. Their parents are hoping for an equally rare match from a bone marrow donor needed to save their lives.

September 03, 2008

NICOLE MACINTYRE
THE HAMILTON SPECTATOR
(Sep 3, 2008)
When Lucas Blake was diagnosed with a rare blood disorder last winter, his mother trusted her faith that the miracle donor who could save his life was growing in her womb.

For months, Manuela and her husband, Keswick, prayed that the baby, unexpected but welcome, was a stem cell match for their seven-year-old son.

"I was convinced this was a godsend," says Manuela, her eyes filling with tears. "We thought, This is going to save him.'"

Baby Owen arrived in June. A month later, doctors delivered the devastating news: he also carries the disease and will need his own marrow transplant. Now the Blakes are appealing to the community to help them find another miracle.

"I don't like to ask for help. I'm a very proud person, but this is my children," says Manuela at the dining table of her North End home.

Lucas and Owen suffer from Fanconi anemia, a genetic condition that affects just a few thousand people worldwide. It's passed on from parents who each carry the recessive gene. There's a 25 per cent chance a child will have Fanconi -- the Blake's oldest son, Noah, 11, is healthy.

Fanconi destroys the body's ability to reproduce blood cells. Often diagnosed in early childhood, the disease weakens the immune system and ultimately leads to death. The only cure is a bone marrow transplant.

With Lucas's health declining and Owen's future uncertain, the Blakes are desperate to find a donor match. "It's what we pray for every night," Manuela says.

Noah, the best chance for a match, was already rejected. Friends and family who volunteered for testing also failed.

The family is hoping to find a donor with the Red Cross's stem cell and marrow network, though their odds may be lowered by the Blake children's ethnicity. A donor match is more likely among the same race. In the Blake's case, Keswick is Jamaican and Manuela is Portuguese.

A match will be more difficult to find, but not impossible, says Cindy Graham of the Red Cross.

Nearly 75 per cent of people registered on the donor list are caucasian. The agency is looking for donors of different races to increase the chances for patients like the Blakes.

Just seven months ago, the Blakes had no hint that Lucas was even sick. Though many children with Fanconi are born with defects, Lucas seemed perfectly healthy.

Then in January, he developed a high fever. His parents thought Lucas had simply caught a bug. But the fever persisted, pushing the Blakes back to their doctor. At the appointment, Manuela, pregnant with their third child, mentioned Lucas was prone to bruising -- an ailment she had always attributed to an active childhood.

The doctor ordered blood tests. Two days later, he called and told the Blakes to take Lucas to the hospital immediately. Manuela and Keswick were relieved when tests ruled out leukemia. Their solace was shortlived. By March, specialists confirmed Lucas had Fanconi.

But Manuela quickly found hope for her son in her pregnancy. If the infant was a match, its umbilical cord blood could help Lucas. Prenatal tests could check if the baby also had Fanconi, but the procedure carried a risk of miscarriage. Manuela declined, not wanting to take any chances.

After Owen was diagnosed, Manuela and Keswick called a family meeting to tell the children. Lucas hugged his father, asking, "Who's going to help me now?"

"That was my breaking point," Keswick says.

Until a donor is found, Lucas will receive regular blood transfusions. The disease has weakened his immune system, making it too dangerous for him to return to school.

From behind his Mickey Mouse face mask, Lucas says he's feeling "sad and worried."

Manuela sends him out of the room to talk about the future. The life expectancy for those with Fanconi is 22 years. An infection could take Lucas or Owen sooner.

But the Blakes trust that a donor will be found.

"I just ask people to put yourself in my shoes," Manuela says. "What if they were your children?"

How you can help
* Registering on the donor list is easier than you think. There's no needles involved. The agency will send a kit in the mail with cotton swabs to rub the inside of your cheek.
* Donors must be between 17 and 50 and in good health.
* If you're a match for anyone in the world, the Red Cross covers your expenses for the donation.
* For more information, go to www.onematch.ca or call 1-888-2-DONATE.

nmacintyre@thespec.com
905-526-3299

Caring jesters

Thursday, August 28, 2008

BY BOB GROVES

STAFF WRITER

Ashley Wingo walked into the hospital as a patient today but was soon turned into a giggling “pineapple head.”

DAVID BERGELAND / STAFF

Brian McNelis painting the face of Lake Hopatcong's Ashley Wingo, 6, to look like a pineapple.

At least that’s what Ashlee, 6, looked like when Brian McNelis finished painting her face yellow, green and orange during a Carnival Day for pediatric patients at Hackensack University Medical Center.

McNelis was one of several entertainers at the event sponsored by the Hope for Henry Foundation of Washington, D.C. Dozens of children were treated to games, juggling, candy and magic tricks, at the Don Imus WFAN Pediatric Center for Tomorrows Children and the Joseph M. Sanzari Children’s Hospital at Hackensack.

“You look beautiful,” McNelis told the chuckling child, who has leukemia.

The foundation was established in honor of Henry Strongin Goldberg, a Washington boy who died in 2003 at age 7 after a lifelong battle with Fanconi anemia, a rare inherited failure of the bone marrow. Henry made many trips to Hackensack for treatment, said his mother, Lauri Strongin.

DAVID BERGELAND / STAFF

Sarah Wingo, 9, of Lake Hopatcong, helping out Josh Edelman during his juggling act.

“Hackensack is known for its expertise in blood diseases,” Strongin said. “If you’re in the mid-Atlantic region, you’re going to come here.”

Henry was a resilient child who never thought of himself as sick, but focused on trying to get better, said Strongin, who the founded organization. Hope for Henry has staged events at Hackensack for the past five years.

“He was an amazing kid,” Strongin said of her son. “He had incredible bravery, a positive attitude, a sense of humor.”

“This is more important than all the money gigs you do,” said McNelis, 45, a Washington clown and actor, who has performed Shakespeare. “Everybody gets a chance to give back.”

Sachi Tejani of Rutherford is only 6, but she has already given something back. Earlier this month, she donated bone marrow to her brother, Neelcq, 8, a patient at Hackensack who has lymphoma. Today,  Sachi was watching Doug Young, a magician, perform magic tricks.

“You have to treat them as just kids,” said Young, 36, who wore an electric blue double-breasted jacket. “They have so much love and support around them,” he said. “That really helps.”

E-mail: groves@northjersey.com

We all went with Papa Teddy and Jeri to see the Lion King at the Kennedy Center. It is surprising how long it took us to get around to seeing this considering how much we love the movie.

I knew it would happen at some point and it did. I got all teary eyed right at the beginning when they sang, "The Circle of Life." I was fine for a while but then came the line,

"You deliberately disobeyed me."

Remember how I used to try and say that in a really low James Earl Jones (he was the guy who played Mufasa in the movie) voice whenever you and Jack did anything wrong.

I finally fell completely apart when when mufasa says - in response to kimba saying he never gets scared -

"I was scared I'd lose you."

That did me in.

The show was a lot of fun. Neither one of your brothers wanted to go, but I watched as Jack smiled and Joe danced in his seat throughout the production.

You certainly are getting a lot of mail lately.