Carews Wait, Pray, Cry -- Teenage Daughter's Life Hinges On Finding Rare Genetic Match For Bone-Marrow Transplant
ORANGE, Calif. - Rod Carew muses wistfully about the snow his daughter Michelle has never seen, the falling flakes she's never tasted, the powder she's never scooped in her hands.
Is there a way, he wonders, to make it snow outside her window in Room 306 of Children's Hospital? Get some machine and let her watch the snow float down magically in the brilliant Southern California sunshine?
No, he says, she'd be wise to that, would tell him, "Daddy, it doesn't snow here, you have to go to Big Bear or Mammoth to see the snow for real."
He and his wife, Marilynn, share smiles that have become rare lately, thinking together about Michelle's way of talking, her jokes and her dreams.
"It's a simple thing that this kid wants to see," he says. Watery eyes. Voice cracking. Fingers twisting the chunky gold Baseball Hall of Fame ring on his right hand. "The first thing I'm going to make sure she sees when she gets well is the snow, I don't care where we have to go."
Acute non-lymphocytic leukemia, an aggressive killer that strikes 500 American children a year, invaded Michelle's bloodstream in September. Some rogue cell simply appeared in the bone marrow and triggered the disease. A college freshman, two months shy of 18. Healthy and lively until that night.
"A bone-marrow transplant would do a couple of things," Dr. Mitchell S. Cairo, her oncologist, says. "One, is that we would eliminate the original cell. And when you use a foreign bone marrow from an unrelated donor, it reacts against the recipient's leukemia cells at the same time it's generating normal blood cells. You just do it once, and it stays, hopefully, forever."
None in 3 million
They wait for that rare genetic match, the gift of life from a stranger. No matter that the chance is infinitesimally small, maybe impossible. How many people have a black father of West Indian and Panamanian blood, a white mother born of Ukrainian Jews?
So far, there's no match with any of the 3 million donors registered worldwide, not even her older sisters, Charryse and Stephanie, who matched each other but not her.
"A lot of minorities aren't in the donor pool to begin with, let alone someone who's like Michelle," Marilynn Carew says. "In 1970 when we got married, interracial couples weren't very popular. So there aren't too many products of those marriages old enough (at least 18) to be a donor."
With a blood-related donor, her doctor says, Michelle's chances of a cure would have been about 75 percent. A non-related donor, 50 percent. No donor, perhaps 30 to 50 percent.
Carew desperately clings to the hope that someone who matches Michelle will call the National Marrow Donor Program at 1-800-MARROW-2 and try to save her. And if she can't be saved, Carew plans to go on urging people to save other children by registering as marrow donors. He's led donor drives so far everywhere from Planet Hollywood to a Panamanian grocery, hundreds of people lining up to give blood samples and sign the national registry.
Early this month he teamed up with Milos Holan, Anaheim Mighty Duck defenseman, in a donor drive sponsored by the team and Disney. Holan, 24, has chronic granulocytic leukemia. He, too, waits for a marrow transplant.
"No matter what happens, my fight's not going to end until the day that I beat this thing," Carew says. "Any time of day that they need me, I'm going to be there. I want Michelle to be able to realize her dream of becoming a nurse and saving someone's life. And I want the other kids who have this disease to be able to realize their dreams, too."
Public respone "unreal"
Rod Carew is a strong, proud, dignified man, unused to revealing his deepest feelings or letting the world into the cherished privacy of his family. Only now he's letting down the barriers he constructed as a player and seven-time American League batting champion. He's reached the point where the stony facade doesn't matter anymore. Emotions so raw, mind and body so weary, he's just given in to it all. He even wrote Dear Abby for help.
"The response we've gotten from people from all over the country has just been unreal," he says. "I never really opened myself up before. People portrayed me as aloof. I became an enigma to them because I was quiet. Growing up being an abused child, I protected myself, I kept to myself because I didn't want anyone to know me."
That didn't stop strangers from sending him hate mail during his career. They attacked his race, his interracial marriage, his wife's and daughters' Jewish faith. After he retired in 1985, he enjoyed the best six years of his life, staying away from the game, traveling from campground to campground with his family in a motor home. Michelle, ever ebullient, made friends everywhere.
"I protected our children from the limelight because there was so much stuff going on out there," Marilynn says. "We were in control, and now there's no control."
Michelle lies in an air-filtered, sterile room in oncology intensive care. A dozen times a day, the Carews scrub their hands before entering and cover mouths and noses with white masks decorated with pink and blue teddy bears.
"The first day Michelle was admitted," Carew says, "I was standing right here in the hallway and there was a little boy, a 7-year-old kid holding onto his IV pole, and he was hitting line drives with a Wiffle ball. He almost hit me. I said, `Man, isn't that great.' Then he got down in the back room and started playing soccer with his sister. They don't give up hope. But he passed away several weeks ago. You never understand the anguish until you come face to face with it."
Daughter fighting hard
For more than a week when the disease first struck, Michelle was blind. Four rounds of high-dose chemotherapy sent the cancer into remission, at least temporarily. The tradeoff: A weakened immune system that can't fight infection. Twice, she nearly died of septic shock.
On Nov. 14, Rod and Marilynn left the hospital to take a quick shower at home, a brief respite from their constant vigil. A few minutes later, a panicked call from Charryse and Stephanie.
"Michelle's eyes had started rolling back in her head, her blood pressure dropped real low, into single digits, her body temperature went up to 105, 106, 107," Carew says, eyes welling at the memory. "When I came back and walked in the room, there were 10 people around her and they were trying to put tubes in her nose and her throat. And she was throwing up at the same time. They wanted to drain her so she wouldn't choke on it.
"And she's calling out to me in this weak voice, `I'm fighting, Daddy. I'm fighting.' And I'm standing there. There's nothing I could do. I didn't want her to see me cry, so I turned around and walked out. I walked directly out of the ward, past the nurses' station, and down the hallway and just banged my head on the wall. I felt so utterly helpless."
Michelle fought through that episode. Four days later, the family celebrated her 18th birthday in her room. A special present arrived, a get-well video from the stars of her favorite TV show, "Lois and Clark."
"You don't touch the television when that Superman show's on," Carew says. "It put a smile on her face to see their video. In all the years I've gone to hospitals to visit little kids, I knew how important it was to them when I saw them smile like that."
Hoping for tomorrow
A stream of visitors lend their support - friends, ballplayers, executives from the California Angels, where Carew uses his expertise to coach hitters. The Carews spent their 25th wedding anniversary and his 50th birthday in the hospital.
"In baseball, if I took an 0 for 4 one day, tomorrow I knew I might get five hits," Carew says. "This is a life and death situation. You don't know if she'll see tomorrow."
Michelle struggles now through another crisis. A fungal infection rages in her body, torturing her face and abdomen, requiring several operations to drain her sinuses. Her white blood cell count is near zero. She's lost 25 pounds. She drifts in and out of sleep, barely breathing. If she survives this episode, Dr. Cairo says, she stands a better chance of tolerating the next round of chemo.
"You've got to breathe," Carew whispers to her, sitting by her bed at 2 o'clock on a Sunday morning. "You've got to inhale and exhale."
She's trying, breathing weakly through an oxygen mask, fever spiking to 105, blood pressure alternately plunging and soaring. Tubes everywhere, attaching her to high-tech monitors and bags on IV poles.
Her mother and sisters cool her with moist cloths, stroke her, talk to her, curl up on chairs beside her night after night. The family's 40-foot camping trailer, with the license plate HLA FAME, has been parked out front the last few days, a curbside home for the Carews.
"Mr. Mom" does the washing
Rod's the only one in the family who goes back to their house at night, escaping for a few hours sleep, doing the wash for everyone else. "Mr. Mom," Marilynn jokes.
"I never did a wash before," he says. "Now I could open a dry cleaning business."
They wait for the fever to break, the counts to rise, the blood pressure to stabilize. They wait most of all for a bone marrow donor to come forward with the perfect genetic match.
"I pray every night," Carew says softly, "and I cry every night."
-------------------- MARROW DONOR PROGRAM --------------------
-- The phone number for the National Marrow Donor Program, based in Minneapolis, is 1-800-MARROW-2.
-- The address for Michelle Carew is Children's Hospital of Orange County, 455 South Main Street, Orange, Calif., 92668-3874.
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