Fred Hutchinson Heroes
Alyson Looney
Alyson Looney

Captured between the covers of a thick blue binder, the memories of Alyson Looney's fight against acute lymphocytic leukemia echo in the copies of e-mails sent by her mother to family and friends.

The e-mails tell the story of an infant whose cell count was off the charts and who had a 25 percent chance of survival before the treatment she received by Fred Hutchinson Cancer Research Center physicians at the Seattle Cancer Care Alliance — including a bone-marrow transplant when she was just 14 months old — saved her life.

Seated at the kitchen table in her home near Mill Creek, Wash., Leanne Looney turned the pages of the blue binder as she recounted her daughter's diagnosis, treatment and recovery. "Someday, when Alyson is old enough to understand, I will be able to share these e-mails with her and explain her cancer story," said Leanne.

Just then, Alyson arrived at the table clutching a long-haired doll. "Here comes Rapunzel. Here comes Rapunzel," she said as she slowly marched the doll across the table top.

Leanne, by now accustomed to her 4-year-old daughter's incurable exuberance, smiled and shook her head. "With all that Alyson has experienced at such a young age — chemotherapy, radiation and a bone-marrow transplant, not to mention all the doctor appointments — I expected Alyson to be a shy or withdrawn little girl, but she's just the opposite," she said. "She's friendly, outgoing and loves to be the center of attention. Alyson enjoys seeing her doctors and loves the attention she receives from them!"

Leanne and her husband, Andy, a landscape architect, had been married four years when Alyson, their first child, was born on Aug. 27, 1999. "I had a very normal and healthy pregnancy," said Leanne.

Their first clue that something might be amiss came when Alyson was 8-months-old and sustained a bruise on her forehead that wouldn't go away. Then Alyson grew lethargic and didn't want to eat or drink. Even so, leukemia "never came to mind," said Leanne.

In early May 2000, the Looneys learned the terrible truth. After making a doctor's appointment for Alyson later in the week, Andy discovered a hard mass in Alyson's abdomen. The next day was a Saturday, but rather than wait for Alyson's midweek appointment, Andy took her to the doctor while Leanne went to work at her sales job at a downtown hotel.

Presented with the list of Alyson's symptoms — persistent bruises, lethargy, the abdominal mass — the doctor immediately told Andy to take Alyson to Children's Hospital and Regional Medical Center in Seattle for further tests and diagnoses. "Andy knew right then something was wrong," said Leanne.

Andy called Leanne en route to Children's explaining what had happened. When Andy and Alyson arrived at the emergency room at Children's, blood tests, x-rays and an ultrasound were performed. An hour later, Andy called again and told Leanne to come to the hospital right away. "We still didn't know exactly what was wrong, but my mind was just racing," she recalled. "How could something be wrong with our daughter?"

About three hours after Leanne arrived, four doctors entered the waiting room. "We knew it was bad news," said Leanne. "It doesn't take four doctors to deliver good news."

"The short answer," said one of the doctors, "is that your daughter has leukemia."

"Once I heard that," said Leanne, "I didn't hear the rest of the conversation. Questions started racing through my mind. Why is this happening to us? Have we been bad parents? Is it my fault she has cancer?

"Andy and I were in a state of shock," she said. "Just a few hours before we were a happy normal family getting ready to enjoy a typical Saturday. We thought Alyson probably had some virus. Now we were faced with a parent's worst nightmare — our child has cancer."

Any degree of cancer would have been devastating news, but the extent of Alyson's illness shocked even her doctors. Acute lymphocytic leukemia (ALL), the most common childhood leukemia, causes the body to produce a dangerously high count of immature white blood cells known as lymphocytes. A healthy person's lymphocyte count ranges between 5-12,000. ALL patients are typically diagnosed with counts of 50-100,000. Alyson was diagnosed with a count of 1.6 million.

"The doctors said they'd never heard of anyone having that high of count," said Leanne. "They were surprised that even with a count like that, she was still functioning and still smiling. You wouldn't have known she was sick other than her being lethargic and a little pale. That's what made her diagnosis so hard to believe. She looked pretty healthy, but was so sick on paper!"

Placed immediately in the intensive care unit at Children's, Alyson was given a 25 percent chance of survival, said Leanne. After three days of treatment, however, the family got encouraging news. Medications and a technique called apheresis, which filtered excess lymphocytes out of Alyson's blood, had knocked Alyson's count down to 6,400. Doctors were amazed that Alyson didn't experience kidney failure or any other complications.

Still, Alyson would require numerous rounds of chemotherapy to drive her leukemia into remission. She was transferred to the oncology unit, where she spent the next six weeks. Throughout Alyson's hospitalization, Leanne remained at her daughter's side, eating, sleeping and showering at the hospital. "I got to know all the nurses and doctors by name," she said. "They became like family to us. We even spent our very first Mother's Day together in the hospital. As long as I could be with Alyson, it didn't matter where we were."

When the Looneys first learned Alyson had leukemia, they were prepared to move "wherever we needed to go to get the best care for her," said Leanne. "But we were told we already were at the best place."

Children's is one of three partners of the Seattle Cancer Care Alliance (SCCA). Through the SCCA, the cancer-care resources of Fred Hutchinson, UW Medicine and Children's Hospital and Regional Medical Center are combined to make it the one of the most comprehensive cancer-care organizations in the nation.

Alyson left the hospital just in time to spend Father's Day at home. Although she returned regularly to the hospital for more chemotherapy and for a while had to be fed intravenously, she was in remission. Two months shy of her first birthday, Alyson had fought cancer and won.

Even so, doctors told the Looneys that chemotherapy alone was unlikely to produce a permanent cure. For that, Alyson, who had a high-risk form of ALL, would need a bone-marrow transplant. "We were told that only one out of 17 children treated with chemotherapy alone survived," said Leanne. "Doctors encouraged us to participate in a clinical trial involving bone-marrow transplants that was being conducted by Fred Hutchinson doctors."

The Looneys decided to pursue the transplant as soon as possible. "If we opted not to do the transplant, then we faced the risk of a relapse and undergoing more chemotherapy, making it even harder to get into remission again," explained Leanne. "Plus we knew the clinical trial would benefit cancer research."

Ideally, Andy, Leanne or another relative would have been Alyson's donor, but their tissue types did not match, so the Looneys turned to the National Marrow Donor Program registry to find an unrelated donor. While a search of the registry failed to find a perfect match, it did turn up a viable one. At first, the Looneys agonized over whether they should wait for a perfect donor, but with no guarantee one would ever be found, they opted to proceed.

The hardest part for Leanne was watching Alyson endure the high-dose chemotherapy and total-body radiation required to kill her old marrow in preparation for the transplant. "I was just a wreck!" she said. "It was so heartbreaking exposing my little girl to such high doses of chemotherapy and radiation, knowing that I am actually killing a part of her. There was no turning back and there were no guarantees that this transplant was going to work.

"I just prayed and prayed that everything was going to work out and that someday this could all be put behind us," said Leanne. "Alyson's laughter, positive attitude and continuous smiles all through the transplant gave me the strength and courage I needed in order to care for her."

Alyson received her transplant on Oct. 25, 2000. She spent 38 days in the hospital before the family moved into an apartment in the Pete Gross House in order to be close to the SCCA clinic while Alyson recovered and received follow-up care. They returned home Feb. 1, 2001.

One year after transplant, the Looneys learned the name of Alyson's bone-marrow donor. Although they haven't met the donor yet — she and her husband are stationed in Germany with the U.S. Air Force — they do correspond regularly. "We are just so thankful to know that she saved our daughter's life!" said Leanne. "This summer, we plan to actually meet when Alyson's donor becomes stationed in the United States."

Three years after her transplant, Alyson continues to take medication to control the rashes and upset stomach caused by graft-vs.-host disease. "Because Alyson had a mismatched, unrelated bone-marrow donor, we've learned that it can take up to six years to fight off graft-vs.-host disease," said Leanne.

Throughout her long battle, Alyson has been an inspiration to Andy and Leanne, who also have a 1-year-old son, Jack. "She has taught us so many things in life and she is living proof that you should never give up — even when the odds are against you," said Leanne. "Looking at her today, you would never know that she experienced cancer and a bone-marrow transplant. She is such a fighter."

Because Alyson experienced cancer as a baby, she never knew her life was at risk. The Looneys consider that a blessing. "She still doesn't understand any of it," said Leanne, closing the blue binder full of e-mails, "but someday she will."

Read more about Acute Lymphocytic Leukemia >


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