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To see seven-year-old Ebony Fawcett, with her thousand-watt smile and fairylike giggle, playing in her hot-pink room, it's difficult to imagine the hardships this Decatur girl has endured during her short life.
In 2006, when Ebony was little more than a year old, she was diagnosed with stage four neuroblastoma, a children's cancer that develops in the nervous system, most commonly in the abdominal and chest area, and is associated with the adrenal glands.
Even before her diagnosis, Ebony's life was far from ideal. She was living with her biological family when her illness was discovered after the Department of Children and Families came to investigate the conditions of her home.
When case workers arrived, they noticed Ebony's abdomen was protruding and called for paramedics. She was airlifted to Riley Hospital for Children in Indianapolis where her journey with recovery, and her new life, began.
Beth Ann Fawcett, Ebony's adoptive mother, believes cancer saved the little girl's life. "If her belly hadn't been sticking out, she probably would have spent 24 hours in a foster home and then gone right back to that house once they got food in the refrigerator." Beth Ann said she knows very little of Ebony's life prior to September 2009 when she first met the child who would steal her heart.
"She just fits," Beth Ann said of her daughter. "Right from the start, I can't really explain it. She just fits so perfectly here. This is where she belongs."
While at Riley, Ebony had several surgeries and procedures, beginning with the removal of the tumor in her abdomen and a stem cell replacement. This was followed by chemotherapy and radiation treatments, which produced some fairly serious side effects.
Having lost approximately 50 percent of her hearing as a result of treatment, Ebony now wears hearing aids that sparkle, almost as much as she does, with each movement. Since she rarely sits still for long, there's a lot of sparkle in the Fawcett household.
It was also necessary during the course of treatment to remove Ebony's adrenal glands, which are responsible for hormones in the body. Ebony's mother said they are unsure how that will affect puberty, but added that it is still a few years down the road. Additionally, all of Ebony's reproductive eggs were destroyed during the treatment and she had one and a half kidneys removed, which could also be an issue as Ebony gets older.
"Ebony will not be a biological mother, but I can help her with the adoption story," said Beth Ann. "God opened that door for me to be able to help her with that. She understands that you don't have to give birth to be a mom.
"She has asked how I became a mom and I told her, 'I prayed to God and God brought me you.' So she says, 'I'll just pray to God then and get a kid, too.' Of course, she needs to wait about 14 years, but I'll explain that later," Fawcett said with a laugh.
Ebony's diagnosis is chronic neuroblastoma, not terminal. Beth Ann said the disease could return time and again. It could be next month or next year, there's just no way of telling if, or when, cancer will reappear.
After Ebony relapsed in 2009, her mother said they didn't fixate on the illness.
"We know she's chronic and we know it will probably come back, just not how many times. But she's kicked it twice. We're going to deal with it."
During Ebony's relapse, she received treatment at Lutheran Hospital in Fort Wayne, where she had chemotherapy twice a day, five days a week, in a three week cycle, for six months. During her two week chemo break, Beth Ann took her daughter to Adams Memorial Hospital at 6 a.m. every Monday and Friday to have her blood drawn. If blood tests revealed she was neutropenic — meaning the white blood cells that help the body fight infection were too low — it was off to Fort Wayne for a blood or platelet transfusion. This usually occurred during the first week after chemo, when her system was most compromised.
Ebony needed several blood transfusions during her treatment, which was somewhat frustrating for her family because no one was able to donate blood for her. However they could, and did, donate for others in need.
"People want to know what they can do to help. This is such an easy thing to do and it can literally save lives," said Beth Ann of donating blood. "It could be a five-year-old chemo kid or an accident victim, it doesn't matter. It could be the difference between life and death for someone."
Another program dear to both mother and daughter is Kate's Kart, a non-profit organization started by the family of Katherine Anne Layman, or "Baby Kate" as she was known to friends and family, to provide books to hospitalized children.
Being out of school since December of 2010, it would have been easy for Ebony to fall behind in her school work. However, Beth Ann said she is right where she should be academically and, with the help of the program, Ebony is reading well above her grade level.
While celebrating a recent birthday, Ebony's friend Sydnee Farmer didn't ask for dolls or toys. Instead, she asked her friends to bring books to be donated to Kate's Kart in honor of Ebony.
"We wanted to give back," said Sydnee's mom, Heather Farmer. "These kids go through so much, and this is such a great cause. It was something we could do to make a difference."
Ebony, who will enter the second grade in August, said she is excited to return to school and to see all of her friends.
Two nurses from Lutheran Hospital came to Ebony's school to speak with her classmates, both in kindergarten and first grade, to explain about Ebony's condition and to answer any questions they had. Beth Ann said this encouraged the children to write letters and cards of encouragement to her daughter.
"Ebony loves cards," said Beth Ann who explained that many of the cards included drawings of her daughter. "It was cute because she always had long, curly hair. They never saw her any differently. When she came to school she'd wear a hat. When it got hot, she'd take it off. Nobody was shocked, it was just Ebony."
Seven months out of treatment, Ebony is finally beginning to gain weight and has grown six inches taller.
Her mom said that Ebony "Absolutely never lost her appetite." She had several side effects during her first round of treatment at Riley, which led to a lot of food restrictions. However, during her second round of treatment at Lutheran, she suffered very few side effects so there were fewer food restrictions.
"Ebony lived on mashed potatoes at Riley. When she's neutropenic, she can't have the salad bar because everything has to be cooked due to germs." Beth Ann said this was particularly difficult for Ebony, who enjoys salads and raw vegetables.
"We waited from December 2010 until January 2012 before she had her first salad bar, and that was the biggest treat. That was better than candy, cake... anything."
Beth Ann said her daughter is still dealing with is the emotional side effects of her illness.
"Growing up in a hospital, losing her biological family, going to school, getting sick, losing school ... that type of stuff. The fear of going to Heaven is there, but we make it as positive as it can be. Our faith gets us through each day. Without our faith, we would not... it's just amazing what faith can do."
Although Ebony is doing well now, there is no real way of knowing what her future may hold, and Ebony's struggles may be far from over. Through it all, nothing has dampened the spirit of this little girl. She laughs, she plays and she still thinks of others before herself. There may be more trials ahead for Ebony, but there's more than enough energy for the fight.
Anyone who would like to send Ebony cards may mail them to 615 N. 10th Street, Decatur. Fawcett will also accept donations of books at their home for Kate's Kart and will deliver the books once a month to area hospitals.