Dear Henry

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.