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A reason to support better health care

February 18, 2007|by BOB MAGINNIS

Don't ever stop being an advocate for your child.

So says Mary Anne Pile, of Falling Waters, W.Va. Pile said that after "having a gut feeling that something was wrong," she took her child, Kaidyn, to a local emergency room where the staff told her that the girl, then 10 months old, probably had pneumonia.

Her husband Brandon, who is a nurse himself, disagreed, saying the child's symptoms didn't seem to fit that diagnosis. After some discussions with hospital staff, Pile said they agreed to give the child a CAT scan.

The results were not good - it was a neuroblastoma.

According to the National Cancer Institute, "neuroblastoma is a disease in which malignant (cancer) cells form in nerve tissue of the adrenal gland, neck, chest or spinal cord."

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In rare cases, NCI's Web site (www.cancer.gov) says, it can even begin to form before the baby is born.

The mass was removed during a six-hour operation at Johns Hopkins Hospital in Baltimore, Pile said, after which doctors began a 24-dose regimen of chemotherapy. In October, doctors detected some cancer cells, but Pile said that after a Jan. 8 check-up, the cancer was gone.

That doesn't mean forever, because the child will need to be checked every three months until she's 10 years old. But for now, there is joy in the Pile household, which will celebrate the good news with family and friends from 4 to 7 p.m. today at Zion Lutheran Church in Williamsport, a celebration that will include the DJ services of local radio personality Lou Scally.

Through all of this, Pile said, Kaidyn has taken everything "like a champ," even dancing and singing at the hospital. Not that she didn't experience pain after her surgeries - a second to place a port in her chest for chemotherapy - but she's held up pretty well, her mother said.

Her other children - 11-year-old Christopher and 7-year-old Kierstyn - were not so stoic. Christopher became physically ill when he heard the news and was "devastated," his mother said.

"Kierstyn doesn't talk a lot about it, but she babies her sister. She does everything she needs. She goes and gets her clothes and she loves to dress her. She even wants to take her to school for show-and-tell," Pile said.

Brandon (who was not interviewed for this column) was hit harder, in part, his wife said, because of the medical knowledge he has.

"He has taken care of cancer patients. He has seen it for himself. He knows what medications they're talking about," she said.

Despite that, Pile said, "You have to stay strong and go on with your daily activities."

Asked what got the family through, Pile took just a few seconds to answer.

"Prayer was No. 1 on the list. Then friends and co-workers," she said.

There have been a few fund-raisers, but Pile said the family is not really asking for donations. She wanted me to do this column, she said, because she wanted to thank the John Hopkins care-providers and the Ronald McDonald House staff for all they've done.

"We also want to give hope to those other parents out there," she said.

Another thing she said that she wanted to emphasize is that parents "are the child's advocate. If Brandon hadn't pushed it, we would left the ER and no one would have found it," she said.

If you'd like to know more about this brave little child, who's almost 2 now, you can read her story at www.caringbridge.com/visit/kaidynandreagracepile.

Her grandmother, Donna Pile Allen, who many Washington County students might remember as a teacher at Bester Elementary and other county schools, has set up an account for the child at Hagerstown Trust.

If you would like to donate - and it's grandma, not the child's parents, who is asking - the account number is 437006291 and her grandmother is listed as trustee.

With children such as this, nothing can ever be taken for granted. When Kierstyn came down with the chicken pox on Christmas Eve, Pile said Kaidyn had to be rushed to the hospital for an infusion of antibodies to protect here. Happy holidays, indeed.

Now let me expound for a moment on a question I've asked previously: Why should the health of any child in the U.S. depend on whether I buy cupcakes at their bake sale or buy a ticket to their bonanza night? And why should parents whose children are ill be tied to the same job just because they fear losing health insurance for their child?

Of course national health care is a complicated issue, but why not start just by covering these children with chronic illnesses? They didn't get sick because they smoked, drank or did illegal drugs, but because some germ, virus or other illness just struck them, without even the rumble of thunder one hears before a lightning bolt strikes. As a nation, we can do better.

Bob Maginnis is editorial page editor of The Herald-Mail newspapers.

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