Brandon Ward's immune system has been so ravaged that his body cannot handle vaccinations.
The 9-year-old's skin is so dry and light sensitive that he must spend most if not all of his day inside, sheltered from the sun. A good portion of his hair has yet to grow back and parts of eyebrows and lashes have turned white.
While his nine-year-old body may still show signs of his nearly six-year battle with acute promyelocytic leukemia and graft-versus-host disease, Brandon's spirit remains strong. Today, he is a cancer survivor and an inspiration to his family.
On Saturday, Brandon, and his mom Colleen, will be in Reston along with more than 2,000 other patients, family members, supporters and fellow cancer survivors at the 4th annual Light the Night Walk.
Blood-related cancers currently affect more than 600,000 people nationwide and an estimated 60,000 of these will die this year. With stories like Brandon's, the walk, sponsored by the Leukemia & Lymphoma Society, helps provide hope to cancer patients, as well as their families and friends who are coping with these diseases.
<b>DOCTORS DIAGNOSED BRANDON</b> with a rare type of blood cancer in April 1997. In July of 1998, he relapsed. Later that year, in October, Brandon underwent a bone marrow transplant at Johns Hopkins Medical Center. Today, thanks to the transplant and subsequent treatments of experimental medications, Brandon is cancer free.
While the cancer is gone, Brandon's pain is not. Brandon is home-schooled because of his fragile immune system, weakened as a result of a "severe to life-threatening" case of graft-versus-host disease. The disease is a common and dangerous side effect of bone-marrow transplants, in which the immune cells in the donated bone marrow make antibodies against the tissues after the transplant. The antibodies will attack vital organs.
Brandon was diagnosed with GVHD in January 1998, three months after his life-saving operation.
"To be honest, battling [GVHD] has been in many ways tougher than the original diagnosis. It is because of the GVHD and the treatment for it that Brandon's immune system is so compromised today," Colleen Ward said. "Typically, after a year, most bone marrow transplant recipients recover their immune system. Well, ‘typically’ for those that survive. It was about a 50-50 chance of Brandon surviving."
<b>BRANDON LIVES</b> in Herndon with his mom and grandmother, Barbara Ward, and except for some outward appearances, is like any other soon-to-be 10-year-old. "I just like to play," he says, clutching his favorite teddy bear, Cuddles the Koala Bear. "I hate schoolwork, especially reading. Don't even mention that word to me."
Prodded, Brandon, who loves chocolate milk and pretzels, admits he "kind of likes" math and when he grows up he would like to build houses and work in construction. He is quick to add, though, that he is in no rush to grow up.
"I just want to be a kid," he said, shortly before attending an after-school theater arts class at the Herndon Community Center on Monday. "Honestly, I don't ever want to grow up."
Brandon said many of his closest neighborhood friends have moved away and he spends much of his time at home with his family in their home overlooking Hutchison Elementary School in Herndon. Trips to the Herndon Community Center allow Brandon to spend time with kids.
A number of children don't play with him because he looks different. "Some children have even called him 'baldy' and asked him what is wrong with his hair," Colleen Ward said. "It is heartbreaking to me, because I know all that he has been through and feel that his outward battle scars are badges of courage. He never gave up."
Her son's spirit and determination are what keeps Colleen Ward going. "Recently, he was in a gym class that asked the kids to have a competition to hang on the bars," she said. "Brandon's hands are extremely hard and cracked and it hurts to hang on the bars. Still, he hung on as long as he could. He didn't hang on the longest, but neither did he fall first. Despite the extreme pain, he was determined not to fall first."
<b>BRANDON'S MOM CALLS </b>her son "amazing" and says most people presume her son is so advanced and mature because of all that he has endured during his young life. "That's true, I guess," she said, "but, in reality, Brandon is just a regular kid."
Recuperating in hospital wards and "getting poked" by nurses, much of Brandon's early childhood was stripped of him. He doesn't want to miss everything the other children get to do, Colleen Ward said. "That's why he doesn't want to get older."
Brandon was four years old when he first showed symptoms of leukemia. He would get slight fevers and bloody noses. The doctors said it was normal. "They didn't realize how bad it was and neither did I," Colleen Ward said.
"Then he started bleeding in his mouth. It looked like he had just bit himself, but it then it happened again."
Shortly thereafter, tests revealed Brandon's white blood cell count was low. Her son had leukemia.
"I was devastated, those were really rough times," Colleen Ward recalled. "Obviously it was never anything I wanted, to be wearing masks and gloves and changing my son's bandages. I remember thinking, 'This is not what I bargained for.' Of course, I wanted to be the PTA president and the classroom helper, but that wasn't to be. You move on. You have to."
<b>ONLY NINE, </b>Brandon has already spent three years of his life in and out of hospitals, including one year away in Baltimore at Johns Hopkins Medical Center, where his mom would spend all day with him, then sleep on a cot next to his bed each night.
Colleen Ward had to take a leave of absence from the consulting firm where she works in order to be by Brandon's side. "Looking back, I don't know how we did it," she said, looking down at her son.
"I don't know either," he said back to her. "But we did."
"Some days I would be so tired and I would look at him still going as hard as he could," she said. "How could I try any less hard than him?"
Brandon does not have time to dwell on the cancer that nearly took his life. He's got better things to worry about: playing with his cat, Memo; practicing his latest magic trick (a dice trick is his favorite); or playing a few notes on his keyboard.
"I'm just looking forward, now. I just try to forget those days," Brandon said of his outlook on life. "I don't like to think about when I was sick. I just forced myself to get through it, that's all I did."
Besides raising money for cancer research, Colleen Ward thinks events like the Light the Night Walk are important in helping current patients see that there are people, like her son, who have survived cancer. "He has taught me to appreciate the good days," she said.
"I remember one day, it was raining and we were standing outside." Colleen Ward said. "Brandon looked at me and said, 'Isn't it a beautiful day?' Meanwhile I was rushing trying to get inside and stay dry. But he was right, it was beautiful."