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A year with leukemia

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Posted: Monday, March 10, 2008 12:00 am | Updated: .

MERIDEN - For Walter Perry, the diagnosis came on Feb. 24, 2007, the day before his sister Roseann's birthday.

Acute myeloid leukemia.

When he got the news, he cried so hard it broke the blood vessels of his face.

As strange as it may seem, a lot of good things have happened to the 25-year-old Perry since. He re-established a relationship with his biological father, with whom he'd lost touch with at an early age. He re-established his faith. He's learned how to gain control over a troubled mind, found a way to contend with thoughts that race wildly, particularly in the middle of the night, and with fear.

He gives those thoughts a place in his journal. Sometimes he posts his work on his MySpace page, but the writing does not have to be anything more than for him and him alone.

"There is so much that must happen inside me, as much as needs to cure this cancer, I think," he wrote recently. "With one healing comes another. Please stay close God."

Perry is in and out of the hospital a lot. Acute myeloid leukemia is a cancer of the bone marrow, where the soft tissue within the bone works to build blood cells. The cancer grows from cells that would otherwise turn into white blood cells. Cancer cells instead of healthy cells wreck the body's ability to fight infection. Shake Perry's hand and you risk giving him something his body can't deal with.

AML is one of the most common types of leukemia, but it's rare in people under 40.

The treatment is chemotherapy. But Perry's cancer returned within a year of treatment, which means that he needs a bone-marrow transplant, in which healthy stem cells will replace his own. For that, a suitable donor must be found, someone genetically compatible. Otherwise, his body will reject the cells. The search is under way for a donor.

On a recent afternoon in his room at MidState Medical Center, Perry set down the Playstation2 controller, which he'd been using to play Resident Evil, to talk about his experience.

He lost his hair after chemotherapy. Though it's grown back, he keeps the look, which he sported at times be-fore he got cancer. Because he's a repeat customer, so to speak, the staff at MidState has gotten to know and grow fond of him.

"It's like having a whole bunch of mothers," he said. "Everybody's taking care of me."

Perry's family moved to Southington in 1995. Along with sister Roseann, 23, Perry's siblings include Michael, 14, and Christina, 17. His parents are Debra and stepfather Michael Pajor. A 2000 graduate of Wilcox High School, in Meriden, Perry had been working as a machinist in Meriden when he became ill.

The easiest person to find as a bone-marrow donor is a sibling, said Dr. Rajani P. Nadkarni, a MidState hema-tologist and medical oncologist. But Perry's only full sibling, Roseann, turned out not to be a suitable donor.

That leaves the search to the national marrow donor program, which takes time and a lot of work, said Nadkar-ni. While a decade ago donating involved a painful process, today it's not much more complicated than a blood transfusion, she said.

The importance of building the registry is pretty straightforward. The larger the pool of donors, the more help available to people such as Perry.

"The more the merrier," Nadkarni said.

For Perry, "time is critical" when it comes to finding a suitable donor, Nadkarni said.

If he can get a transplant in the next month to six weeks "he will have the best outcome," she said.

Before he got cancer, Perry never had anything more serious than an occasional cold or seasonal allergy. But around Christmas 2006, Perry "got sick and stayed sick," he said.

"It was weird because the symptoms changed every day," he recalled. He'd feel tired one day, and the next come down with a "wicked headache," followed by an earache. He maintained a fever from Christmas to the second week of January, and his doctor initially thought he had strep throat. On antibiotics, Perry managed to feel OK for a couple of weeks. Then he had a toothache, and was treated for infection.

The problem was he kept getting sick again. Blood tests were done, under the suspicion that he might be suffering from mononucleosis, and when those results came back, he was told by a technician that his white cell count "was the highest she'd ever seen."

One doctor thought it was lymphoma, and Perry thought "I'm going to die now," he said. When the diagnosis of AML was finally made, he figured he "had a better chance of getting through this."

"But finding out that I had cancer, no matter what kind, it's not a good thing," he said.

Perry's cancer was in remission following chemotherapy treatments a year ago, but relapsed after 10 months. In the meantime, he spent some time in November in Ohio, with his biological father, Walter Perry Sr., and though he had to return because he got sick again, he said the experience helped him feel "more at peace now in my life than I ever had been."

"It might be the most tragic thing to happen to me, but if it hadn't happened I would have never met my biological father," he said.

There was also the benefit of keeping a journal.

"I always liked writing," Perry said, "especially poetry."

"It's become my way of praying," he said. "It helped me to calm my racing thoughts and bring them to a manageable speed."

Diane Lafferty, a MidState social worker who has helped Perry, said she often encourages patients under such circumstances to try journaling.

"It's one of the options I give to help deal with a diagnosis," she said. "I find it's very helpful."

Lafferty tries to encourage reluctant patients by telling them they're "not going to be graded on it" and reminding them that the journal does not have to be shown to anyone. "Then it becomes less threatening," she said.

Perry, said Lafferty, has "been very open to exploring a lot."

"He's a wonderful soul, that's the way I look at it," she said.

"He's been reaching out artistically, with words," said Perry's mother, Debra Perry, "and I think that he's trying to be positive and reach out to as many people as he can."

Perry said his illness has given him something he hadn't had before. "It's given me a need and a direction," he said, to "educate people and advocate the need for bone marrow donation."

"The more you get involved, the more you come to see that it isn't few and far between, that it's a lot of people who need help," he said.

Perry "has really matured as a human being," Nadkarni said. "He's more serious about his whole life and been able to spin this into a positive."

"I'm very proud of him," she said.

Perry's family is organizing a benefit, set for April 6 at the Elks Club in Southington, to raise funds for the search for a donor and to highlight the importance of bone marrow donation in general. Perry's health insurance, through State Administered General Assistance covers the transplant but not the search for a donor, said Debra Perry.

Plans for the benefit are still being formulated. Debra Perry said she's been looking for a Southington company to help sponsor the event. More information is available by calling (860) 628-6395.

jkurz@record-journal.com

(203) 317-2213

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