Children share cancer’s cruelty

09/23/2010 12:00 AM |


Steve and Kerin Orlowski of Mattituck with Cormac and his little sister, Caleigh. Cormac is one of the thousands of recovering pediatric cancer patients in the U.S. whose families still worry about other cancers flaring up in the future.

At 3, Cormac Orlowski looks like a healthy and happy little boy. But his parents, Steve and Kerin Orlowski of Mattituck, still make trips with him back and forth to Children’s Hospital of Philadelphia and Wills Eye Hospital every three months so he can be treated for unilateral retinoblastoma, malignant tumors affecting one eye.

“It’s devastating,” Mr. Orlowski said of the moment when a parent first learns that a child is seriously ill. “You never expect that.”

September is Childhood Cancer Awareness Month and while parents and children affected by the disease never escape the reality that dominates their lives, they hope others will gain a greater awareness of the lingering effects, even when a child is eventually diagnosed as cancer free.

The Orlowskis, and parents of other local kids who have battled cancer, all told similar stories about the struggles they and their children have faced.

Diagnosed when he was 10 months old, Cormac had his right eye removed and a prosthetic one put in its place. It looks fine but requires careful attention to avoid infection.

And now that Cormac is 3, he’s asking the questions a curious child would ask about why he has one eye that’s “different.” He complains about having to be anesthetized for treatments, telling his dad he doesn’t like “that man with the mask.” And he has to be peeled away from his parents to go with the doctors into the operating room, Mr. Orlowski said.

Like all parents of pediatric cancer patients, the Orlowskis have found their lives turned upside down. What little downtime they had for leisure activities — Mr. Orlowski works as a landscaper and goes to school full time studying education at St. Joseph’s College and Ms. Orlowski is a dental assistant — is now consumed by trips to Philadelphia for Cormac’s treatments.

Costs are overwhelming because there are few specialists in the field, and the hospitals the Orlowskis use are out of their insurance company’s network.

Even so, Mr. Orlowski considers himself among the fortunate because Cormac’s grandmother, Eileen Orlowski of Riverhead, has started “Through An Angel’s Eyes,” a foundation to garner support for Cormac’s treatment.

“It’s amazing how people can come together,” Mr. Orlowski said.

A cancer diagnosis at any age is frightening. But pediatric cancers, even when they can be treated successfully, still carry burdens that can affect a child’s entire future.

When his treatments end, Cormac will have to continue tests until he’s about 6, to be sure he has not developed retinoblastoma in the left eye, and he could face other cancers when he’s in his 20s. And the very treatments and medications so vital to him as a baby could cause learning disabilities.

The Orlowskis are not alone in their worries.

“We’re always watching,” Susan Lawlor of Mattituck said, after 23 years of monitoring her daughter Loretta’s condition. When she was 6 months old, Loretta was diagnosed with bilateral retinoblastoma, malignant tumors affecting both eyes, after Ms. Lawlor noticed a strange silver flash reflecting in one of her daughter’s eyes.

“She was the happiest kid in the world, and we never knew there was a problem,” Ms. Lawlor said. “Then you realize you haven’t given birth to the Gerber baby.”

The child underwent radiation treatments and took five medications, all of which carried their own potentially toxic side effects, Ms. Lawlor said. “First I cried, then I called my priest,” she said. His words stick with her today: Don’t ask why because there are no answers and you’ll always be looking for an argument.

“I wiped my eyes, I pulled up my bootstraps and I began researching,” she said. And 23 years ago, research wasn’t easy, prior to the Internet. Spending most of her waking moments caring for Loretta, she would make telephone calls to gather information.

Today, Loretta has no sight in one eye and is legally blind in the other. But Ms. Lawlor was determined to “cram as much into her little head as possible” so she would have memory of colors, objects and shapes before her vision started to fail.

Peggy Angermaier of Wading River cares part-time for her grandson Duncan Angermaier-Brown, who at 6 was diagnosed with neuroblastoma, a cancer that affects the lymph nodes. He’s now 12 and has been through numerous treatments — chemotherapy, surgery and infusions of his own healthy stem cells — all of which required that he miss a year of school.

“It affects everybody in the family,” Ms. Angermaier said. “We all just do what we have to do,” she said.

She worries that he could develop leukemia from chemotherapy treatments, but she tries not to dwell on that possibility. “When you’re in a good place, I don’t ask why. I just love him to pieces.”

Pediatric cancer takes a huge toll on the entire family, Susan Lawlor said.

“You miss out on a lot,” she said of the hours consumed with medical care and arguments with insurers about coverage.

“You become very humble,” she said, explaining that eventually Loretta’s care had to be covered by Medicaid. “I was never a taker,” she said.

Loretta was denied natural socialization with other children because of her compromised immune system. And Ms. Lawlor, now divorced and living with Loretta, experienced her own cutoff from friends. They withdrew because they didn’t know what to say — and there was little time to speak with those friends who didn’t withdraw, she said. Her closest contacts became the nurses and doctors treating Loretta, plus occasional telephone calls with parents of other children with pediatric cancers.

The drugs and radiation treatments Loretta received affected her ability to learn, Ms. Lawlor said. Her daughter is intelligent but processes information slowly. In a conversation, she will often grow silent because by the time she can formulate her thoughts, the conversation has moved on to other subjects, her mother said.

“The bottom line is, kids are surviving” but are still facing uphill battles, she said.

“It’s always waiting for the other shoe to drop,” Ms. Lawlor said. And she knows today what she didn’t realize then: “Don’t forget to cry and cry for yourself.” Keeping all the emotions pent up is draining and saps you of the energy you need to deal with your child’s needs, she said.

“If I can help anybody and give anybody any peace and hope to hold on to, then maybe all this is not for nothing,” Ms. Lawlor said.

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