FIGHTING CHANCE; LITTLE LEUKEMIA PATIENT GETS HOPE.
On the day Alejandra Navarro learned her son Amador had leukemia, she lighted a velador, placed the religious candle on her kitchen counter and prayed for a cure.
Alejandra, 32, has burned more than 300 of the candles in the three years since she learned that Amador, then 3, had the cancer.
``I'll keep a candle lit until he gets healthy,'' she said.
As Amador endured painful chemotherapy and radiation treatments without success, the candles stayed lighted.
Now he's 6, and the flame has become the fire of hope.
In December, after a difficult yearlong search for a donor, Amador underwent a bone marrow transplant that - if successful - will allow his body to generate healthy blood cells and free him from leukemia.
Eleven weeks after the transplant, Amador looks radiant. He's chubby from eating five meals a day, and a fuzzy down is covering his once-bald head.
He is still fragile.
He spends his days indoors to avoid contact with viruses. His younger brother, Abraham, is his playmate and soulmate.
``Thirty-one, thirty-two, thirty-three,'' Amador chanted in loud glee one day last week as he colored a calendar with Abraham.
``He tells me, `I'm cured; why do I have to take so many medicines?' '' said Alejandra as she uncapped seven bottles and lay a spread of blue, pink and white tablets on a napkin.
After other therapies failed, doctors concluded a bone marrow transplant was Amador's only hope.
Amador is one of 1,600 children diagnosed each year in the United States with acute lymphocytic leukemia, the most common form of the blood cancer to strike youngsters. Twenty percent are not cured; 550 die every year.
The first plan of attack for Amador's leukemia was intensive chemotherapy at Childrens Hospital Los Angeles, a treatment that causes severe nausea and other harsh side effects.
``He cried, saying he didn't want to get better, that he wanted to die because he would see me crying. He would say, `No, Mommy don't cry. I don't want to get better,' '' Alejandra recalled.
By the summer of 1996, Alejandra was rejoicing in her son's weight gain, his seeming recovery.
By October, the symptoms had reappeared. Cancer had won the battle. Doctors started a second round of chemotherapy and began to consider a bone marrow transplant.
Because the blood antigens must match closely, Amador's father, Jose; his mother; younger brother, Abraham; and about 10 other relatives were tested. None was suitable.
So in March 1997, the American Red Cross held the first of six donor drives around Los Angeles to find a match. Amador posed for a flier photo in his favorite vaquero outfit - his thick brown hair peeping out under a giant cowboy hat - to announce a donor drive for himself and two other youngsters.
At these drives, the Navarros learned they weren't alone.
``We'd ask, Why us? But there are a lot of families like us,'' Alejandra said.
With Amador at their side drawing in coloring books, the Navarros spent weekends appealing to people in communities with high Latino populations, where a donor match would be most likely.
Time and again, the Navarros encountered misconceptions about bone marrow transplants.
``Many people did respond, but others just ignored us. It's fear that prevents people from being tested,'' Alejandra said.
Like any other kid, Amador dreamed of his future, of growing up to be like his favorite soccer player, Alberto Garcia Aspe, or of becoming a police officer and riding in an LAPD helicopter.
It was in May that Amador got a letter and a set of sergeant's stripes from Newport Beach police Sgt. Steven Van Horn, a leukemia victim who had read a Daily News story about Amador's search, just days before getting a transplant himself.
``I just wanted to write to you and tell you, just hang in there, and I'm sure you will be an excellent police officer,'' Van Horn wrote.
Within days, Amador penned a letter to his new pal. But Van Horn never answered.
Later, the family learned Van Horn developed complications and died in November, just a few weeks before Amador got his transplant.
``To this day, Amador refuses to throw away the sergeant stripes,'' Alejandra said.
A match is found
The Red Cross drives turned up no donors. So Childrens Hospital nurses stepped in and filed a request with the National Marrow Donor Program in Minneapolis.
Thanksgiving came early for the Navarros. In October, Dominique De Clerck, bone marrow transplant coordinator at Childrens Hospital, called.
Matches had been found - perfect matches.
After more tests, one donor, who would remain anonymous for a year to protect all involved, consented in November.
``When they told me, it gave me joy,'' Alejandra said. ``But sometimes I feel scared because everything they tell you - the process - seems difficult.
``But you have to have faith.''
As the Dec. 22 date for the marrow transplant approached, Jose, a 35-year-old gardener, grew concerned. ``I don't know about transplants. . . . At first it seems like an impossible thing. There are times when you feel there is no hope, but then there are times when things look up.''
A few weeks before the transplant, Amador faced a series of procedures that tested his strength.
One day, as Childrens Hospital nurse Vicki Ferrer approached him with a syringe, Amador's eyes filled with tears and he covered his face with his hands.
Ferrer inserted the needle swiftly. Amador howled, ``Ay, it hurts me. No more.''
``I know, Papi,'' said Alejandra. ``Everything is going to be all right.''
A few days later, Amador entered the hospital for the transplant. Doctors implanted a catheter into his chest so medications and blood platelets - even his new bone marrow - could be injected without constant needle jabs.
Through the Christmas holidays and into the new year, Room 432 West of the Bone Marrow Transplant Unit would be Amador's home.
Above the bed, Alejandra propped up the black-and-gold crucifix that had hung in Amador's room at home. He wanted it to watch over him.
After 11 days of preparatory chemotherapy and radiation, Amador got his transplant. It was three days before Christmas.
For all the hope and prayers and waiting, the transplant was simple, anticlimactic.
The morning of the transplant, Alejandra explained to her son that the marrow would drip through intravenous tubes, the catheter and into him. There wouldn't be any shots. He wouldn't be put under.
They had prayed the night before, as they did every night, mother and son asking God's help.
An hour before the transplant, Amador and Alejandra sat together in his room and said a final prayer.
In a journal she kept to record the transplant, Alejandra marveled at Amador's ability to endure pain:
I asked him how he felt, and Amador, always giving me strength, told me that he felt well.
Shortly before 8 p.m. Amador's primary nurse, Dawn Landery, began transfusing the bone marrow into Amador as he lay in his bed. The marrow dripped slowly from a thick plastic pouch.
When the nurse began transfusing the bone marrow through the IV line, everything became calm. After that he just started singing as if nothing was going on. To me it was a true miracle, something incredible that at 2:30 in the morning he would be singing and singing.
Amador received two 600-milliliter pouches of marrow during the 5-1/2-hour transplant.
He was so excited, he didn't fall asleep until 4 a.m.
I feel happiness and a sense of internal peace. I can't begin to explain the wonders that God has produced in our lives. There's no doubt that faith moves mountains.
Amador responded well, surprising his doctors and nurses. ``The doctors said it was the first time they saw a young patient have no major complications,'' his mother said proudly.
But he wasn't cured yet. Doctors would not know for three to four weeks whether Amador's body accepted the bone marrow. Some patients' bodies attack and destroy the foreign material.
In the days following the transplant, Amador vomited, developed a slight fever, had an inflamed liver and high blood pressure - minor complications, doctors said.
With his immune system fragile, Amador lived inside a germ-free room, where a plastic curtain separated him from visitors who wore special gowns and masks and could only reach him through plastic sleeves stitched into the curtain.
By mid-January, Amador was eating solid foods and managed to complete the math workbook that his home teacher, Steve Loverich, had brought him.
``He has not required any pain medicine the whole time,'' Landery said. ``I couldn't ask for a better patient. His main problem is that I can't beat him at Nintendo.''
Five weeks after the transplant, Dr. Ken Weinberg broke the good news to the Navarros: Their son could go home.
``He had a couple of days of low spirits,'' Weinberg said. ``But that smile that you see - he had that smile throughout his stay here in the hospital.''
The morning of his homecoming, Alejandra arrived and dressed Amador and his brother in matching black suits and ties, outfits saved for special occasions.
As Landery explained Amador's medications, the boy stood frozen at the entrance to his room, reluctant to step out of the germ-free zone of his bubble.
Jose saw his reluctance, put a face mask on his son, and hand in hand walked him out of Room 432 West for the first time in six weeks. Thanking everyone in sight, they swept through the hospital and into the sunshine.
A lesson in courage
``Everything from the transplant on forward has been pure happiness,'' Alejandra wrote. ``May God bless those people who in one form or another have helped us morally and physically, and many thanks to the person who after God was the one who was able to give the gift of life to my son.''
Throughout the ordeal, Alejandra drew courage from Amador.
``It was an incredible experience. Perhaps it was his reward for all he's suffered.''
All indications show that Amador's body accepted the bone marrow. Amador has gained 8 pounds feasting on quesadillas, soups and carne asada at home.
Amador believes he has been healed. Doctors say he is doing as well as they could hope for. Still, there is no way to be certain that he has made a full recovery.
So Alejandra keeps up the candlelight vigil she started for her son almost three years ago.
``Not until I see him completely healed will I blow out the candle. But I have faith that Amador will move forward with no problem.''
Jose Navarro carries with him a faith that has grown stronger through the ordeal. Now he can give advice to other parents facing a child's grave illness.
``Keep striving to move forward and don't give up. You go through very difficult moments, but at the end of the road, you'll find what you've been looking for.''
LEUKEMIA: WHAT IT IS
Leukemia is a cancer of the blood-forming cells in the bone marrow. The disease occurs when immature blood cells multiply out of control and crowd out mature cells in the marrow.
How it forms
Chronic exposure to benzene in the workplace and to high doses of irradiation can help trigger onset of the disease, but these exposures do not explain most cases. Indeed, there is no known cause.
Easy bruising or bleeding, paleness, easy fatigue, a recurrent minor infection or poor healing of minor cuts.
Who has leukemia
An estimated 125,000 people in the United States are diagnosed with leukemia each year.
Acute lymphocytic leukemia is the most common form in children, with 1,600 new cases diagnosed a year.
The cure rate for children with acute lymphocytic leukemia is 80 percent, up from the 1960 survival rate of 4 percent.
Leukemia kills more than 550 children a year, more than any other disease among children 1 to 14 in the United States.
Source: The Leukemia Society of America
7 Photos, Box
PHOTO (1--Color) After a 2-1/2-year fight with leukemia, Amador Navarro is prepped for a marrow transfusion.
(2--Color) Battling leukemia, Amador Navarro is examined by one of his doctors, Ken Weinberg, before he is admitted into Childrens Hospital Los Angeles for his transfusion.
(3) Amador Navarro, 6, gets some home schooling from his teacher, Steve Loverich.
(4) Amador Navarro's father, Jose, and brother, Abraham, 5, watch from behind a barrier as nurse Dawn Landery, center, supervises the marrow transfusion at Childrens Hospital Los Angeles.
(5) Wearing his suit for special occasions, Amador Navarro waits with his father, Jose, to go home.
(6) Amador Navarro gets a check-up before being admitted to the hospital. He was measured, had his temperature taken and weighed in at a healthy 44 pounds.
(7) Amador hugs a stuffed rabbit Saturday, six weeks after leaving Childrens Hospital with transplanted bone marrow.
Photos by Gus Ruelas / Daily News
BOX: HARVESTING BONE MARROW
Graphics by Dionisio Munoz / Daily News
SOURCES: The National Marrow Donor Program, The American Bone Marrow Donor Registry and University of Pennsylvania Cancer Center.
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|Publication:||Daily News (Los Angeles, CA)|
|Date:||Mar 8, 1998|
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