FAITH, HOPE, BRAVERY AND BONE MARROW : 16-YEAR-OLD BOY UNDERGOING RISKY NEW PROCEDURE HE HOPES WILL PROVIDE CURE FOR SICKLE CELL ANEMIA.

Byline: Jenifer Hanrahan Daily News Staff Writer

It's a decision that no 16-year-old should have to make, a decision that could save - or end - his life.

Charlie McLemore, a high school junior with dreams of playing football and going to college, has two choices:

Undergo an experimental procedure that can cure him of sickle cell anemia. There's one catch; his doctors say there's at least a 10 percent chance he could die from complications.

Or, forgo the procedure and continue to live with the inherited blood disorder that has already sent him to the hospital 160 times in his young life. Although he could live well into adulthood with the disease, the pain it causes ``feels like a thousand little, bitty men inside my body trying to get out with pickaxes.''

He chose the procedure after meeting a 15-year-old San Francisco boy who had been cured.

``I've been going through this for my whole life,'' Charlie said. ``It would be heaven not to go through it for the rest of it.''

This week, Charlie will go to the University of California at San Francisco Medical Center, where, if all goes well, he will emerge in two months to a life without chronic pain.

Charlie will become one of the first 50 children in this country with sickle cell anemia to undergo a bone marrow transplant. In this procedure, Charlie's bone marrow, which produces the defective red blood cells responsible for the disease, will be replaced with his sister's marrow, which produces normal blood cells.

``It makes my stomach hurt thinking about it,'' he said. ``I said, `Lord, you know my situation. You know the trying time I'm going through. Can you help me? All these things I'm worried about, can you just lift them up a little bit so I can get through this?' ''

When Charlie's mother, Joleavette McLemore, first heard about the new procedure, she had Charlie's younger sister, Tracie, 13, take a blood test to determine if her blood type matched Charlie's. Although Charlie also has an older half-sister, chances were slim that her blood would match.

Only children who have a sibling with a matching blood type are considered for the transplant, which is the only known cure.

There's a 1-in-4 chance a sibling's blood will contain identical antigens, white blood cell structures that play a role in rejecting foreign tissue.

The blood test revealed she was a perfect match.

``We had one chance,'' McLemore said. ``It was a miracle.''

She found for Charlie his ``one chance,'' but Charlie's mother wouldn't allow herself to make the decision for him. When he was a child, she nursed him through every illness and made choices about medications and treatments. But, this time, he had to decide.

``As a parent, the hardest thing for me to do was to back off and let him make the decision for himself,'' she said. ``He's getting older. All I can do is be there by his side.''

It was the same when he turned to his friends, the pastor at his church and even his doctors, for guidance.

``It's a gamble,'' said Dr. Bill Mentzer, director of the sickle cell program at the University of California at San Francisco Medical Center. ``We try to provide them with all the information we have, but we think it's very important that they make the decision. It's their life.''

In a study published in the New England Journal of Medicine in August, the transplant cured the disease in 18 of 22 children. But two children died from complications, including graft-vs.-host disease, in which the transplanted bone marrow rejects the body.

Another risk is that Charlie's own bone marrow could regrow - and sickle cell anemia could return.

If he believes he is courageous, Charlie doesn't let on.

``I just got tired of going through so much pain,'' he said.

In the United States, sickle cell anemia primarily affects African-Americans, and about 80,000 suffer from the disease. About 80 children are born with sickle cell disease each year in California. Many people with sickle cell anemia can expect to live into their 40s or 50s.

Because of the risks, only children with severe sickle cell disease are considered for the transplant. Charlie qualified. One of his lungs collapsed twice. When he was 12, sickle cells clogged blood vessels leading to his brain, causing a stroke.

Twice-a-month blood transfusions to treat sickle cell anemia have damaged Charlie's liver.

A few days after Thanksgiving, Charlie spent 15 days in the hospital because he was having a painful ``sickle cell crisis.''

``At times I say to myself, `My God, are we doing the right thing?' '' McLemore said. ``I've seen Charlie in so much pain he didn't want to live anymore. It's taking a lot of soul-searching and praying to get through this.

``But I feel he's made peace with it.''

Charlie's mother keeps track of medication and doctors' appointments in her overstuffed appointment book.

On Thursday, Charlie and his mother will arrive at the hospital. Friday he begins chemotherapy, followed by three days of full-body radiation to wipe out his bone marrow.

Jan. 16 is the target date for him to receive his sister's marrow. That day, Tracie will be put under general anesthesia for about three hours while the marrow is removed from her hip bone. It will leave her sore for a couple of days.

``At first I was scared to do it,'' Tracie said. ``But I got tired of him going through all that pain.''

Because bone marrow carries with it the key to the body's immune system, Charlie will remain in isolation while he receives transfusions of red cells and platelets, and antibiotics to fight infection until his marrow regenerates.

``That is a crucial time,'' Mentzer said.

His mother will be at his side throughout the ordeal. Insurance will pay for the transplant, but the McLemores have to pay their own travel and living expenses. Charlie will spend six to eight weeks in the hospital, then several months in nearby housing.

The New Commandment Baptist Church in Paramount raised more than $1,300 for Charlie. Loretta and Rodney Lewis, whose daughter, Special Pullum, is Charlie's girlfriend, served fried fish dinners to 200 friends and neighbors that brought in an additional $452.

Christopher Nance, weather forecaster for the morning news show on NBC Channel 4, spearheaded a celebrity golf tournament in October that raised $70,000 for his children's foundation.

With some of the money from the tournament, Nance, who also has sickle cell anemia but is too old for the procedure Charlie is undergoing, has promised to take care of the rent on the McLemores' house in Paramount and for their housing in San Francisco.

``We are going to be with him every step of the way,'' Nance said. ``One thing I realize from my own experience is that the family plays a very important role in the healing and recovery process. We're going to keep them together.''

Nance, who has been a longtime fund-raiser for sickle cell anemia research, will visit Charlie in the hospital in a few weeks. (He already bought him a video game.)

``This is the bravest thing anybody can do,'' Nance said.

When he goes into the hospital, Charlie says he is going to think about an end to I.V.s, blood transfusions and holidays spent in bed, pressing a button that sends intravenous painkillers surging through his body.

Maybe he could really try out for his high school football team. Maybe going to Morehouse College in Atlanta could be more than a dream.

Maybe his life could really be ``heaven.''

``I know in my heart I'm going to be all right,'' he said.

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2 Photos

Photo: (1--Cover--Color) A cure would be heaven

(2) When Charlie McLemore undergoes a bone marrow transplant that may cure his sickle cell anemia, his mother Joleavette, left, will be by his side, and sister Tracie will provide the marrow.

David Sprague/Daily News