Sometimes Children Lead The Way In The Fight Against Leukemia

By Kaaren Valenta

Leukemia was the last thing on Beth Montoya’s mind when her two-year-old daughter Emily became ill last summer.

“She had recurrent flu symptoms, a low-grade fever, diarrhea,” Mrs Montoya said. “I brought her to the pediatrician two or three times in August and talked to him by phone every week. He thought maybe she was lactose intolerant.”

An emergency room nurse at Norwalk Hospital, Mrs Montoya was concerned, but not alarmed, by Emily’s symptoms. Then her daughter began complaining of a “hurt arm.”

“I took her to the pediatrician, then to the emergency room,” Mrs Montoya said. “We thought it was something simple. But when they drew blood in the emergency room, that’s when they found it – leukemia.”

The diagnosis was absolutely devastating, Mrs Montoya said.  She and her husband, John, had been happily anticipating the birth of their second child, Brian, who was due in three weeks. Now they feared that they might lose their daughter.

Immediately the hospital staff did a bone marrow test, a spinal tap, and a chest x-ray to confirm the diagnosis. The following day surgery was performed to insert a portacath into Emily’s chest and intravenous (IV) chemotherapy was begun.

“At that point, the only good thing besides having the baby was that the fact that the doctors would be able to store stem cells from Brian’s umbilical cord in case Emily ever needed them – and if Brian is a match.” Over the next four months Emily would be in the hospital every three weeks for IV chemotherapy.

“There were six sessions,” Mrs Montoya said. “This was the most difficult part. During this treatment she also lost a third to half of her hair and developed mouth sores. Now she is in the maintenance phase, and takes chemotherapy every night by mouth and with a shot every week. She also takes antibiotics every week to prevent her from getting pneumonia.”

Every 12 to 14 weeks Emily undergoes a spinal tap and chemotherapy is injected into the spinal cord to treat the spinal fluid for leukemia. She has already undergone three bone marrow tests, during which a needle is inserted into a bone and marrow is extracted for testing.

Throughout the months of treatment, Emily has remained a happy, confident child.

“She’s wonderful about it,” her mother said. “She takes pain medicine and just lays there during the procedure. It’s harder on us than it is on her.”

“The [oral] chemotherapy doesn’t affect her,” Mrs Montoya said. “All of a sudden she is back to her normal self. We haven’t seen her with so much energy since last spring.”

Emily faces a total of two and a half years of chemotherapy, followed by bone marrow tests, lumbar punctures, and blood tests for the remaining two and a half years.

“But there is, I believe, a 90 percent cure rate, based on being in remission for five years,” Mrs Montoya said. “Emily has been in remission since October 3. Now that we know the program… well, it stinks but it is not as bad as it could have been.”

Emily’s treatment is scheduled to end in March 2003.

“Our families have been wonderful,” Mrs Montoya said. “My mother goes to the doctor with us. It makes her and us feel better.”

Beth Montoya grew up in Newtown, the daughter of Marg and Don Studley, and attended Hartwick College in upstate New York, where she earned a bachelor’s degree in nursing. She met her husband, John, who was working in the x-ray department at Norwalk Hospital while attending the University of Connecticut. He is now a data warehouse manager at General Electric’s corporate headquarters in Fairfield.

The Montoyas have been contacted by the Make-A-Wish Foundation and the nonprofit agency will grant Emily’s wish to go to Disney World.

“She’s wants to see Mickey,” Mrs Montoya said. “But she can’t travel until she is three.”

When Ginny Chion decided to launch Coins for the Cure, an area-wide educational and fundraising effort against leukemia, Beth Montoya was invited to join her committee. At first Mrs Montoya wasn’t sure if she wanted to get involved.

“I met Ginny Chion and Marie Rojo. Both of their sons had died from leukemia. I wasn’t sure I could handle it,” she said. “Then I decided that people needed to be made aware of the symptoms of leukemia and I wanted to do whatever I could to help.”

Collection buckets for the Leukemia & Lymphoma Society have been placed throughout Newtown along with bookmarks that provide the following information:

“Leukemia symptoms are similar to those of many common ailments, but eventually become more persistent and severe. These symptoms include anemia (pale complexion), chronic fatigue, pain in joints and bones, recurrent infection, bleeding without clotting, bruising easily, high fever, weakness, swelling of lymph nodes, spleen and liver. See your physician if any of these symptoms persist or recur. You should have a complete physical exam, including blood tests. If leukemia is suspected, a bone marrow test is done. The sooner treatment begins, the more effective it can be.”

Last week the Coins for the Cure Committee gave the Cyrenius H. Booth Library educational materials, including videos, about leukemia. For more information, or to help in the battle against leukemia, call Mrs Montoya at 270-8096, Marg Studley at 426-3651, or Marie Rojo at 426-8830.