ABLEnews Extra

                   Forever Alive

     To be frank, the orientation of certain family
     members as depicted in this story differs profoundly
     from our family's and that of the countless families
     at whose sides we have been privileged to battle
     through CURE. Thrust into a fight--often for life
     itself--with the malignancy of TAB bigotry, none
     of us are, Deo gratias, "the people we used to be."
     But while, alas, the family can lose the war to
     forces more privileged and powerful than itself--
     powers that increasingly determine who lives and
     who dies, it can "be lost" only if it surrenders
     to self-serving self-pity and abandons the
     struggle for the loved one and the cherished ideals
     it is called to defend. That is our belief,
     taught by the strictest of schools, i.e., life.

     But we must see life as it is not as we would
     have it be.  Accordingly, as all our posts,
     we present this account for your information
     and reflection.
     
     [The following file may be freq'd as CAN50308.* from
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The Arteaga family of Petaluma is allowing The Chronicle to tell the
story of family members' lives as they cope with 5-year-old Nikita's
leukemia. This is the fourth story in the ongoing series. Nikita's
condition was diagnosed before she was 2. Now she needs a bone- marrow
transplant. A nationwide search is under way.
   
The Arteaga family in Petaluma is on a quest for normalcy.
   
They want to watch "Aladdin on Ice." They want to spend a night in a
motel room. They want to all be together for a long time.
   
But they also want to survive the stress of coping with 5-year- old
Nikita's cancer--acute lymphocytic leukemia.
   
That has meant, for each family member, a kind of turning inward and
away from the others, leaving greater gaps between them, and longer
bridges to cross for support.
   
"The family is lost," said Nikita's 50-year-old maternal grandmother,
Summer Duncan-Hall. "They're not the people they used to be."
   
She copes with Nikita's illness by staying away. "My way," Duncan-Hall
said in the Arteaga's kitchen the other night, "is to cut the
memories."
   
It is not unusual for families of children with leukemia and other
life-threatening diseases to lose their sense of normalcy, and to
crumble--many parents' marriages end in divorce.
   
The Leukemia Society of America says the sick children often wonder
whether they are being punished for doing something wrong; parents
often feel guilty, angry and confused; siblings can be resentful and
wonder whether they did something to cause the illness.
   
Arteaga family members also just plain avoid each other. It has gotten
worse in the last year, since Nikita relapsed.
   
"We eat in different rooms. We watch TV in different rooms. We are
just trying to separate from each other so we don't have to talk about
things, I guess," said Brooke Arteaga, 31, Nikita's mom.
   
"We try not to think about the future, in terms of her surviving,"
said Nikita's dad, Robert Arteaga, 30.
   
He was thinking of the future, though, when Nikita finished her first
round of leukemia treatments. He started a construction business.
   
But seven months later, last spring, Nikita relapsed. Her bones began
to hurt. Millions of abnormal blood cells began to multiply,
preventing the formation of normal blood cells and platelets.
   
The rounds of chemotherapy began again. So did Robert Arteaga's
overwhelming feelings of anger and sadness.
   
These days, Robert has had a hard time mustering enthusiasm for the
work he loves. Even going to the lumberyard or the hardware store for
supplies can be a chore.
   
"I don't have anything to say to them," he said the other night, alone
in the living room, his eyes on the television set. "My mind is on
other things. I'm focused on her future, her present...I feel we need
each other.
   
"You have this feeling of hurt inside and you feel it shows on the
outside," he added.
   
The feeling of hurt comes not only from the stress of watching his
daughter fight cancer, but also from seeing the pain the treatments
bring.
   
Over and over, the Arteagas have watched Nikita scream after a spinal
taps. They have seen her hair fall out and her skin puff up from
powerful chemotherapy.
   
Her heavier chemo doses, administered through a tube implanted in her
heart, are followed by hours of intravenous fluids that can continue
into the night.
   
It leaves the whole family exhausted.
   
"Any little thing can create havoc. Anything," said Robert Arteaga.
"We can all be happy and getting along one day; the next day, it's
chaos."

Nikita also needs a bone marrow transplant and is waiting for a
matching donor. A nationwide search is under way, especially for
someone of Latino descent.
   
No family member has marrow that matches Nikita's. A perfect match
from an unrelated donor would provide her with the best chance at
long-term survival, said Dr. Michael Amylon, director of the bone
marrow transplant service in pediatrics at Stanford University Medical
Center.
   
The chances of survival after such a transplant, among patients in
second remission like Nikita, are about 35 to 40%, Amylon said.

He also said the likelihood she would be cured by chemotherapy is
"very small."
   
Robert and Brooke Arteaga are struggling with scary issues such as
whether to allow Nikita to undergo a transplant with her own marrow,
which could be removed and treated when she is in remission.
   
The procedure is less dangerous than transplanting unrelated marrow,
Amylon said, but there is a greater risk of the leukemia returning.
   
The Arteagas are also considering having another child on the slight
chance that he or she could provide a match.
   
But the emotional complications arise not just from evaluating crucial
medical procedures.
   
For one thing, Brooke Arteaga had to quit her job to care for Nikita
full-time. Nikita started kindergarten last fall, but has gone to
school only about 30 days.
   
Money is scarce. So, Brooke Arteaga said, is emotional support.
   
"The doctors are afraid I'm showing stress in front of Nikita," said
Brooke, who is taking medication for anxiety and insomnia.
   
"But I can't help but think about her...I hope she can make it to the
end of this year. Am I going to be able to make it past then?"

She and Robert have been together for 15 years. Now the leukemia is
straining their marriage.
   
The Arteagas are considering family counseling. But for now, they say,
the logistics are just too complicated.
   
"I'm always the last one to be taken care of--by me," Brooke Arteaga
said. "Maybe I feel like I've been forgotten--that's what this does to
you. You drive to the hospital, she gets sick, it's never ending."
   
It is so never ending that the family almost spent this Christmas with
Nikita in the hospital.
   
The family also wanted to see "Aladdin on Ice," too. But no. Nikita
spent that day in the hospital. After missing the last 21 days of
kindergarten because a classmate had chicken pox, Nikita almost
returned yesterday. But her white blood cell count was too low to ward
off infections.
   
Nikita's sister Jasmine, 13, has lost interest in school, her parents
say. Her grades have dropped dangerously.
   
The extra attention she had when she was an only child, for eight
years, is gone. Now Jasmine doesn't know whether her birthday will be
celebrated, or her talent show attended, because of Nikita's frequent
trips to the hospital.
   
"Jasmine was spoiled rotten," her grandmother Duncan-Hall said. "Now
she's become a shadow."
   
But Jasmine writes. She writes stories and poems about Nikita.
   
Jasmine's teacher thought a poem she wrote about Nikita was so good
that it will be included in a student book.
   
The poem is called "Cancer of the Blood?":
   
   "...She's five and barely above my knees/
   
   Does she have hope?/
   
   The doctors say nope/
   
   Yes, she's been a miracle for years/
   
   Doctors say for death she's near/
   
   But family say they're wrong/
   
   I know in my heart/
   
   No matter what condition/
   
   She'll be alive forever./''

   --
   
   A bone-marrow match for Nikita has been hard to find. The best chance
   is from a donor of Latino descent, doctors say. Nikita's heritage is
   Indian, Mexican, German and Irish. Determining marrow type involves a
   simple blood test. To be tested, contact Heart of America in San
   Francisco at (800) 366-6711. A trust fund for Nikita has been set up
   at Northbay Savings Bank at 311 North McDowell Boulevard, Petaluma
   94954. Donations also can be made to the Carousel Fund, a volunteer
   organization that provides support for families with catastrophic
   illnesses. The address is 17 Buckeye Court, Petaluma, 94952. For more
   information, contact the Leukemia Society of America in San Francisco
   (415) 543-9821.

     _________________________________________________________________

[A Child with Cancer, A Family in Pain, Torri Minton, San Francisco
Chronicle, April 8, 1995]

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