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High schooler tackles sickle cell
By Lem Satterfield and Bill Ordine
Baltimore Sun

Two days after his blood transfusion at Johns Hopkins, Gregory takes part in practice for the Kenwood High School football team.

To the amazement of medical experts, Lester Gregory plays football despite having sickle cell anemia. He spends several hours each month getting a blood transfusion.

BALTIMORE – Lester Gregory, slender and serious, sat expressionless on a hospital gurney, two long tubes extending into each of the 15-year-old’s lean arms.

Where a needle pierced the soft inside of his right elbow, fresh whole blood coursed into Gregory’s veins; oxygen-rich blood that would stave off anemia and invigorate him. From his left arm, clumpy, sickle celled blood flowed into a large bag to be discarded.

“I’ve been doing this for so long – since I was little – I don’t even feel (the needles), really,” said Gregory, who was diagnosed with sickle cell anemia as a baby. “I’ve gotten so used to them, it doesn’t even affect me anymore.”

Blood transfusions, which Gregory has been getting for nearly eight years at Johns Hopkins Children’s Center, help thousands of sickle cell sufferers survive. But in the case of the high school junior, the monthly two- to four-hour procedure helps him defy the odds of the insidious disease even further.

Less than 24 hours earlier, the 5-foot-6, 130-pound Gregory was playing defensive back, albeit briefly, for the school football team at Kenwood High in Essex, Md.

It’s an accomplishment that astonishes even medical experts.

Willarda V. Edwards, a physician who heads the Baltimore-based Sickle Cell Disease Association of America, said she was unaware of a sickle cell anemia sufferer playing strenuous athletics at any high level.

“This is my first year being clinically cleared to play football because this sickle cell anemia has been holding me back,” Gregory said. “I’ve wanted to play football since elementary school, and the transfusions help me to have that chance.”

The ailment is an inherited blood disorder in which hemoglobin clusters and distorts red blood cells from a normal round shape to a sickled one that impedes the free flow of blood. This results in less blood and oxygen reaching organs and tissue.

Sickle cell anemic mostly affects people of African descent but also can occur in Hispanics as well as people from the Mideast, Southeast Asia and the Mediterranean region. More than 70,000 Americans have the disorder, experts say.

While life expectancy for those with sickle cell anemia has at least doubled in the past generation – sufferers typically died in their 20s and now live into their 40s and even 60s – complications can be acute. Gregory was near death twice when he was 2 and had a mild stroke when he was 8.

Sufferers can experience severe discomfort, called “pain crisis,” and the lack of normal blood flow can cause severe damage to vital organs, including stroke and heart attack.

Exertion escalates sickle cell

To be able to play football, Gregory needed consent from his parents and physicians.

Gregory’s family physician initially signed the required paperwork but with restrictions, including that he remain hydrated and take rests when needed (his first practice this past summer was on a sweltering mid-August day).

However, Gregory’s doctors at Johns Hopkins were unaware of his football participation. The morning after his first practice, Shirley Reddoch, a pediatric hematologist at the hospital, was alarmed at the teenager’s sickle cell count during his monthly transfusion.

Because of exertion in practice, Gregory “showed an unusually high sickle cell count,” his father said. After consulting with Clifford Takemoto, Gregory’s pediatric hematologist at Johns Hopkins Hospital, Reddoch agreed to allow Lester to play, the elder Gregory said. The consent came with a cautionary tone.

“Football is not a sport that pediatric hematologists generally encourage for people with sickle-cell disease,” Reddoch wrote in an e-mail to the Baltimore Sun. “The risks, as best they are known, as well as the fact that there are always unknown and unpredictable risks, are conveyed. The ultimate decision is between the youth, the parents and the sports coach.”

Said Takemoto, who has treated Gregory since 2000: “The transfusions decrease the risk of having sickling complications (as a result of) exertional activity, but do not completely eliminate the risks. (Lester’s) family was counseled about these potential risks and strategies to further reduce risks.”

Lester’s mother, Lori, 40, said “despite the risks, it was important to allow Lester to play because we saw how important it was to him.

“He has a passion for football, and if the doctors would allow it, I wanted to allow him to have the experience of being a regular, normal young boy.”

Said Takemoto: “You can’t absolutely say he should or shouldn’t be playing. It’s really tough to put a number on the risks. Of course, there can be sickling complications which can result in pain crises.”

A painful toddlerhood

When Lester was 4 months old, he was diagnosed with Hemoglobin SS – the most severe form of sickle cell anemia. From fevers to agonizing discomfort in the abdomen, arms and joints, “it seemed that from then on, severe pain was an eminent part of little Lester’s life,” Lori Gregory said. “Sometimes, it seemed like anywhere you touched him, he would scream.”

When he was 2, Lester suffered near-death pain crises twice in a five-month span; each required blood transfusions.

“Throughout most of his toddlerhood, Lester had use of only one leg due to the chronic pain crises. In fact, he started preschool at age 4 hopping on one foot,” his mother said.

Meanwhile, Lester’s love for football was beginning to take hold. During the fall, the toddler would dash through the living room with a tiny football in his hands, mimicking the players on television.

“As soon as a player on TV would get tackled, he’d fall down on the ground right in front of the television,” Lori Gregory said. “It was priceless.”

Still, Lester was limited to light activities, such as video games and touch football.

Once, after playing outside, Lester, then 8, ran into his home “screaming, grabbing his head and complaining that it was hurting,” Lori said. “His eyes were bulging, veins were popping out of his head.”

An MRI revealed that Lester suffered hemorrhagic stroke, which is bleeding within the brain. Soon after, he began receiving the monthly transfusions.

“Before the blood transfusions, I’d get tired extremely fast during activities,” Lester said. “But afterward, I have a lot of energy and don’t get exhausted so quickly.”

First day of practice

Lester clearly remembers the day he stepped onto the practice field for the first time.

“My first day, I got butterflies. But wearing the equipment, shoulder pads and the helmet – that felt really cool,” Lester said. “Being my first day ever, it was one of the hardest things ever. I was trying not to look different than anyone else, but since I got tired faster than everyone else, I had to drink a lot of water.”

Even after Lester’s parents and doctors allowed him to play, Kenwood football coach Tony Ruocco had concerns. The stern tone of the medical note he received gave him pause.

In part, it warned that Lester’s condition “can flare during extremes of temperature and stress, which are intrinsic in football” and that such flares can lead to “sudden cardiac death.” The note went on to say that Lester needed to be allowed to hydrate “aggressively and without restrictions.”

“I was like, ‘Sudden death? Wow, this is scary,’ ” Ruocco said. “It made me extremely nervous, to be quite honest with you.”

Ruocco pulled Lester into his office. “I told Lester, ‘If you want to go and get water, you go and get water – you don’t even have to ask me,’ ” the coach said.

As Kenwood has marched to a 6-2 record, Lester has had no health problems, according to Ruocco, who added that the relatively slight reserve safety has “held his own” during tackling and blocking drills with some of the team’s veterans.

Kenwood linebacker Donnell Flemming has become one of Lester’s biggest fans – particularly during a weekly tackling drill in which the two take turns hoisting each other off the ground.

“At first, he was a little intimidated, but I told him to bring the noise. Now, he can pick me up or anybody up,” Flemming said. “I wasn’t aware of his disease until after I asked him why he missed practice. He said it was to get a blood transfusion for sickle cell disease. I said, ‘You’re still Lester to me.’ He’ll get no pity.”

A pro’s admiration

The night before his transfusion last month, Gregory was making the most of the final 38 seconds of Kenwood’s Baltimore County League win over Woodlawn.

From a crouched stance about 15 yards beyond the line of scrimmage, Gregory, at free safety, alternately fixed his gaze on the opposing quarterback and the receivers on either side.

With textbook technique, he backpedaled at the snap, spindly legs chopping up and down in oversized pants, arms pumping beneath his loose-fitting, royal blue No. 62 jersey.

Although Gregory is a backup for his high school team, playing sparingly, his story has caught the attention of Denver Broncos cornerback Domonique Foxworth, a former University of Maryland star.

Foxworth phoned the Gregory home and spoke to Lester’s father, also named Lester, just hours before he made a game-ending interception to seal a Bronco victory over the Baltimore Ravens on Oct. 9.

“I spoke to his dad that day, and I called and spoke to (young Lester) a couple of days later. I told him I thought what he’s doing is very impressive and inspiring to me,” said Foxworth, who carries the sickle-cell trait. “There’s nothing in my life that I have done or will do that I believe compares to what this young man is doing.”

For Gregory, getting the chance to play football helps him endure the disease and the transfusions that allow him to pursue life as normally as possible.

“If there is anyone else out there with sickle cell who has the dream to play football or any type of sport, maybe I can be an inspiration for them to do what they want to do,” he said. “Unless they come up with a cure, it’s going to be with me for the rest of my life. Hopefully, I’ve learned how to overcome it, and I can do what I do on the football field.”

http://www.fortwayne.com/mld/journalgazette/living/16260904.htm