Marking the end of cancer treatment

The end of treatment is as stressful as the diagnosis, one survivor said.
By WILLIAM K. ALCORN
VINDICATOR HEALTH WRITER
YOUNGSTOWN -- Dallas Patterson was three days past his fifth birthday when he was diagnosed with acute lymphocytic leukemia in April 2000.
Dallas worried he would have a stroke like his grandfather did when the grandfather underwent cancer treatment, Dallas' mother, Tarresa Patterson of Sandy Lake, Pa., said.
On Friday, Dallas, along with five other child cancer patients treated at Tod Children's Hospital the past three years, were given an "end of treatment celebration" along with their parents and siblings and doctors and nurses.
The other children invited were: Brandon Leonelli, 6, of Columbiana; Daniel Procopio, 6, of Champion; Tristin Ross, 4, of Sharon, Pa.; Michael Dinh, 13, of Youngstown; and Frank Matejka, 6, of Burghill.
Children are diagnosed, go into treatment (radiation and/or chemotherapy) and complete treatment all the time at the hospital, said Dr. Ayman Saleh, director of the Pediatric Adolescent Oncology & amp; Hematology Department at Tod's.
"We decided to invite these six together because they all ended treatment -- their 'journey of survival' -- at about the same time," he said.
Obviously, end of treatment is a happy time: The cancer, along with much of the fear, is gone.
Parents feel not only enormous relief that their children have survived cancer, but also that their family lives, turned upside down by fear and endless days at the hospital for treatments, can get somewhat back to normal.
"It's over," sighed Christine Procopio of Champion, whose son Daniel was diagnosed with acute lymphocytic cancer Dec. 23, 2000, at age 3.
Long days
A typical day, Procopio said, was: go to work at midnight; come home, spend the day at the hospital with Daniel for treatments; go back home and fix dinner; grab a few hours of sleep; return to work. That routine was repeated day after day, month after month.
The other children of Procopio and her husband, James Procopio -- Nathan, Amanda and Elizabeth Perry -- spent a lot of time with their grandparents, Carol and Joe Casale in Howland.
Leaning on family, church and friends was a common theme among the parents at the celebration.
"Family was a major lifeline for us," Tarresa Patterson said of herself and her husband, Jeff. She said other parents she met whose children had cancer also became very important.
"It gave me someone to talk to who understood exactly what we were going through," she said.
Lori Parry of Columbiana said it was "terrifying" to learn in April 2000 that her 3-year-old son, Brandon, had T-cell lymphoblastic lymphoma.
She said she and her husband, Jason Parry, coped by praying, and with the help of family and friends.
Lori was pregnant with her daughter, Morgan, when Brandon was diagnosed, and the stress caused problems with the pregnancy. Six weeks ago she gave birth to a second son, Jacob.
Courageous kids
Another thing in common is the respect the parents have for the way their children dealt with their disease.
"Throughout treatment, Brandon acted so normal. You wouldn't have known anything was wrong. He didn't let anything get him down, " Lori Parry said.
"Sometimes Brandon was even excited to come to the hospital for treatments. They treated him so well and everyone likes him. He talks to everybody. He's a great kid," his mother said.
"Dallas only got sick one time, and lost his hair once during treatment. He's the toughest kid I've ever met," Tarresa Patterson said.
"Treatments didn't faze him. When Daniel's hair fell out, he just told everyone his sisters pulled it out," Christine Procopio said of her son.
Siblings of children with cancer have their own trials.
Dylin Patterson said he "had no idea what was going to happen. I felt sorry he had to go through all the treatments and I was worried about him. But I still beat him up."
"I was very sad and scared he might die," said Daniel Procopio's sister Elizabeth, 13.
"I was really attached to him. I'd rock him to sleep," said Amanda, 14, Daniel's other sister.
"I was very scared, but mom said Daniel had more chances to live than to die," Amanda said.
Being strong
The parents themselves, though frightened and shocked to learn their small children had cancer, said they had to stay strong and focused.
"I work in a nursing home, so I'm used to medical things," said Christine Procopio. "My reaction was, there's no choice but to deal with it. You can't fall apart. Who else was going to take care of him?"
A positive outlook also seemed to be a common theme among parents and the cancer victims.
Dallas Patterson said he would tell any kid diagnosed with cancer what his parents told him.
"You're going to make it through this and you'll be all right," he said.
Today's statistics support Christine Procopio's and Dallas' optimistic outlook.
In 1960, the cure rate -- defined as cancer-free for five years after treatments end -- was about 30 percent, or one in three children. Today, the cure rate is about 80 percent, Dr. Saleh said.
The change in the success rate is due not to new drugs, but to sharing information on treatments and protocols that work best through a national clinical trial network called the Children's Oncology Group, Dr. Saleh said.
The children and their families at the celebration Friday have a new beginning, which in its own way can be emotional and scary, said Dr. Koh Boayue, associate director of the Pediatric Adolescent Oncology and Hematology Department at Tod's.
New fears
The hospital monitors the patients closely, particularly the first year. But they no longer have the safety net of treatments keeping the cancer at bay, and will be wondering, "Will the happy times continue?" Dr. Boayue said.
To help, Tod's gives each survivor's family an End of Treatment Binder, developed by nurse practitioner Carla Vadala of Hubbard, herself diagnosed with leukemia at age 16.
The end of therapy is just as stressful as the diagnosis, Vadala said. When chemo stops, there is always the fear of the cancer coming back, she said.
The binder contains information on coping with the new situation, a summary of treatment, pathology results, a copy of the report saying the cancer is gone, a section on follow-up and what to do and when, and healthy lifestyle information.