Thursday, November 20, 2003

Read About How Megan Maly Is Winning Her Battle

This is not something that, emotionally, I could have written.

I had to leave it up to Bill Maurer, a former colleague of mine at the Register and Tribune, to get the job done.

Bill, who has his own consulting business, writes and publishes the Blank Children’s Hospital quarterly newsletter. For the fall edition, he put together a wonderful story about Megan, our 4-year-old granddaughter; Kevin, our son; Donna, our daughter-in-law and Dr. James Roloff, Megan’s magnificent doctor.

I’m letting Maurer take over now. He writes the story beautifully:

Megan Maly had been feeling punky for a week. Instead of walking, for some reason she preferred to crawl. And then there were those bruises her mother had spotted when changing a diaper the night before.

It was New Year’s Day 2001, a Monday. The office of the pediatrician Megan saw was closed for the long holiday weekend.

"Kevin and I decided we couldn’t wait until the next day to take Megan to the pediatrician," says Megan’s mother Donna. So the Malys got up on New Year’s morning and drove Megan from their West Des Moines home to the Emergency Department at Blank Children's Hospital in downtown Des Moines.

"We didn’t even bring her blanket or pacifier because we thought she’d get a quick x-ray of her leg and the doctor would see her and send us home," Donna Maly says. "Instead, they did x-rays and blood work and then told us, ‘We’re admitting your daughter. It looks like she has leukemia’"

Unfortunately for Megan, "She has experienced nearly every side effect that a child can get with lymphocytic leukemia," says Dr. James Roloff, the Blank Children’s cancer specialist who was on call that New Year’s Day and who has treated her since.

Fortunately for Megan, nearly 2 ½ years of chemotherapy—along with 15 spinal taps and eight bone marrow examinations and assorted other pokes too numerous to quantify—appears to have rid her little body of the form of leukemia that affects roughly 2,200 children in the United States every year. Her last treatment was in May—three weeks before she turned 4—and Dr. Roloff doesn’t expect she’ll have any more.

"I would say she is 90 to 95 percent likely to be ‘event-free’ of any disease" from now on, he says. "All the indicators appear to be favorable."

And her odds of survival grow better with each passing day, matching the improvement in therapies that have been introduced in the last quarter of a century. In the mid-1970s, children with acute lymphocytic leukemia had a survival rate of 53 percent. By the mid-1990s, the survival rate had increased to 85 percent.

Megan Maly had all the classic symptoms of leukemia when her parents took her to Blank Children’s Hospital, the only hospital in Iowa totally dedicated to the care of children. Besides being tired, bruised and sore—caused by cancer cells packing themselves into the marrow of the bones in her legs—she had a low-grade fever. She got a nose bleed at the hospital that was difficult to stop.

Her platelets—that portion of the blood that is used for clotting—should have registered between a count of 150,000 to 450,000. Hers was but 4,000—and it later fell to 2,000.

The next day, a bone marrow test was done. And on January 3, a port—a long flexible tube through which chemotherapy could be infused—was placed in her upper right chest. Doctor Roloff also performed a spinal tap, so pathologists could check the fluids in the spinal column. Then he prescribed chemotherapy. The oncologists in Blank Children’s, all members of the nationwide Children’s Oncology Group, administer the same treatment that would be used at any other children’s cancer center in the United States.

She spent 35 days of the first two months of 2001 at Blank Children’s Hospital, a total of 60 days in the first 15 months of treatment. Donna Maly was with her almost every minute.

"I had to know what they were doing, what they were putting in her body, what that was going to do to her," says Donna Maly.

As far as Kevin and Donna Maly are concerned, the experiences at Blank were positive.

"They are the greatest staff in the world," Donna Maly says of the group of nurses and others who cared for Megan. "They did a remarkable job for us.

"We dealt with a lot of people, and there was not a one that I would say was less than top notch."

And, she adds, "Dr. Roloff was great. He’s so knowledgeable. He does a good job of making you understand and of keeping the whole family involved."

One of the advantages of Megan having her illness when she did is that "she was young enough that she didn’t know life in any other way," says Donna Maly. Now she does.

Weighing in at 18 pounds when she checked into Blank Children’s Jan. 1, 2001, and never getting more than a couple pounds heavier in two years, she is now up to 34 pounds. She has her hair back, she took swimming lessons for the first time over the summer, and she learned to ride her bicycle (with training wheels). She is attending the Little Lambs pre-school at Mount Olive Lutheran School, where her brother (Nathan) is in first grade.

She is, says her mother, "such a sweetheart, and yet very independent, determined and stubborn."

Not to mention the custodian of a smile that could melt an iceberg.

[Maxine and Ron Maly say thanks to Dr. James Roloff; to Megan’s other physicians; to the fantastic nurses and other members of the medical team at Blank Children’s Hospital; to Patrice Maurer, director of development at Blank, and to writer Bill Maurer. All of you are incredible. Ron Maly’s e-mail address is malyr@juno.com and his website addresses are http://home.mchsi.com/~malyr and www.rmaly.blogspot.com].

Vol. 3, No. 79
Nov. 20, 2003