Life-saving gift from small package

Sophie Avery hopes her story will be the impetus forformation of an umbilical cord blood bank in the area.
By WILLIAM K. ALCORN
VINDICATOR STAFF WRITER
GIRARD -- Sophie Avery owes her very life to a newborn baby.
"Our baby, our little boy," is how Sophie and her husband, Ernie, fondly refer to the unidentified child whose umbilical cord blood, transplanted in lieu of bone marrow, appears to have staved off Sophie's leukemia.
"I'm not allowed to use the word cure for at least three years," Sophie said.
But the Averys, thanks to "Baby," recently took a family trip to Niagara Falls. It was the first time in three very tough years that Sophie has felt well enough to take a vacation.
Avery described the Niagara trip as a "nice getaway." Actually, it was much more. It was a much-needed boost for the couple's morale.
And there is more good news. Avery is a licensed practical nurse who worked at St. Elizabeth and St. Joseph health centers before her illness was diagnosed in 1998.
Now, for the first time in a long time, she has been cleared to go back to work. She said her blood counts were good at her last examination, she is feeling great, and the whole family is excited.
Finding out: Bruises on her legs in 1998 were the first signs that something was wrong. She went to her family doctor, Dr. Gerald Mihok in Boardman. Blood work revealed her platelets were low, and she was referred to Dr. Antoine E. Chahine of the Blood and Cancer Center in Boardman. The diagnosis was acute myelogenus leukemia.
"It was hard to believe. I was crying. I was angry and upset. How was I going to tell my family? That was the worst. It turned our lives upside down," she said.
She underwent five rounds of chemotherapy in 13 months, but relapses were coming more quickly and she was placed on the national bone marrow transplant list in March 1999. However, no match was found and time was running out.
In July 2000, Dr. Chahine referred her to University Hospitals Ireland Cancer Center, where Dr. Mary J. Laughlin, director of allogeneic transplantation, was doing research on using umbilical cord blood transplants in adults.
Dr. Chahine had heard Dr. Laughlin speak, talked to her about Sophie, and believed Sophie would benefit from Dr. Laughlin's program.
Dr. Laughlin, also an assistant professor of medicine at Case Western Reserve University, published the results of her study of 68 adults who had cord blood transplantation after high doses of chemotherapy and radiation.
In her article in the June 14 issue of The New England Journal of Medicine, she said that just two ounces of blood harvested from an umbilical cord can generate a new blood-producing immune system. Also, a perfect match is not needed, as with bone marrow, because of the immature nature of cord blood stem cells.
Of 68 patients who underwent cord blood transplants, and for whom other forms of treatment were likely to fail, 19 were alive, with 18 of those disease-free after 40 months, Dr. Laughlin said. Sophie was number 69 to receive the experimental treatment.
Fearful: "I put it off. I was afraid. There were so many things I had missed with my illness. I wanted to know all my options," Avery said.
Finally, she was examined by Dr. Laughlin in late spring 2000 and was told a cord blood transplant was her only chance to live.
Avery received the transplant Sept. 27, 2000, and stayed in the hospital a month because of the possibility of infections while her immune system rebuilt itself.
While she didn't feel anything during the transplant, Avery said the after-effects were "pretty bad. I was completely exhausted, had a lot of joint pain, was nauseous and vomiting, and developed pneumonia. I could hardly function."
Her husband took a couple of months off work to stay with Sophie and take care of her and the children.
Avery knew within 10 days that the transplant "took," and she went home Oct. 27. She returned to University Hospitals several times for blood and platelet transfusions and now visits her oncologist, Dr. Chahine, and Dr. Laughlin every other month.
She hadn't had any new transfusions for a month as of June 15 but has developed cataracts from the steroids and chemotherapy. She had surgery on one eye and will have surgery on the second eye in time.
"My appetite is still not right, and things don't taste right. I had tremors for a long time and couldn't write. It was frustrating," she said.
But she hopes to be clear of all drugs by the end of the year. "Now, I take about six drugs a day so our 'baby' doesn't get rejected," she said.
The treatment "has been long and not without problems, but I feel so much better, finally. I've been blessed. I'm doing really well," she said.
Hoping it's over: At the same time, she said she is "very tired of the whole thing. I'm hoping this is the cure we've been waiting for. It's no fun. It was terrible for Ernie, I'm sure. He had to take care of me and the kids," she said.
Because cord blood is immature, it is a baby's immune system developing in Avery. As a result, she said she will have to get her baby shots all over again.
Avery, 48, of 21 E. Prospect St., is a 1970 graduate of Youngstown's Chaney High School and graduated from Choffin Career Center as a licensed practical nurse.
She worked 14 years at St. Elizabeth Health Center in labor and delivery, and since 1994, in maternity at St. Joseph Health Center in Warren.
Her husband, Ernie, is a 1970 graduate of Austintown Fitch High School and is receiving manager at Lowe's on state Route 46 in Warren. Before that he worked at Valley Container in Mineral Ridge. They are members of Redeemer Lutheran Church in Austintown.
They have four children: Ernie Jr., 26, of Girard; Kelly Avery, 23, of Columbus; and Katie and Emily, 15 and 12, at home.
Avery said she is extremely grateful to the parents who donated the umbilical cord blood for her transplant. "They gave me some more time," she said.
"Avery said she hopes her experience raises awareness in parents, doctors and hospitals about the value of umbilical cord blood and the need for a cord blood bank in the area. Her match came out of New York, she noted.
"It's a true waste to take that blood and just throw it away. It's not a cure for all types of leukemia, but it could help a lot of people," she said.
alcorn@vindy.com