Donated Bone Enhances Teen’s Life

from Children's Magazine, Spring 2005

Photography by Steve Kast

Story by Kristin Kelly

Erica Krahl was sitting in her sophomore English class the first time she felt the pain.

“My arm was numb, sort of achy,” she said. “It hurt really bad.”

Erica called her mom to come get her at school and take her to the doctor. The doctor did an X-ray, but didn’t find anything wrong.

A few months later, Erica’s right arm still hurt – sometimes so much it made her cry.

After three more visits to doctors, the 16-year-old from Westminster went to the University of Colorado at Denver and Health Sciences Center (UCDHSC) for an MRI on the advice of a sports medicine physician, who thought she might have a pinched nerve.

“He didn’t think we had anything to worry about,” said Carol Malloy, Erica’s mother.

But as it turned out, they did.

Something ‘Suspicious-Looking’

The next day, Carol and Erica got the call from the hospital.

“They told us they had found something suspicious-looking,” Carol said. “They said it was a mass.”

Erica, Carol, Erica’s stepfather Larry and brothers Mike and Joey weren’t sure what that meant, but they knew it wasn’t good.

“I was crying,” Erica said.

The hospital told Carol to take Erica to an orthopedic surgeon right away for a biopsy and bone scan of her arm.

“In my own mind, I was thinking, why tomorrow, why so fast?” Carol said.

The next morning, the orthopedic surgeon looked at the MRI and did the bone scan and biopsy.

“I didn’t think it was a big deal,” Carol said. “Erica had always been healthy. She’d never had any problems before.”

A week later, on Oct. 1, 2004, Carol’s birthday, the family got the awful news: Erica had Ewing’s sarcoma, a type of bone cancer. She had a growth in her right arm bone (humerus) about the size of a cherry.

The first thing Erica said was, “Am I going to die?”

“I was really scared,” she said.

The doctor explained that 70 percent of patients diagnosed with Ewing’s, a disease that typically appears between ages 10 to 20, are cured, and that her chances for survival were good.

Erica asked if she would lose her hair.

“He said yes,” she said. “All the things I didn’t want to hear. I don’t think I knew what I was in for.”     

The doctor explained that Erica would need chemotherapy, and that the best place for her was The Children’s Hospital, ranked the fifth-best pediatric cancer center in the nation in 2005 by Child Magazine.

That night, Erica checked into the inpatient unit at Children’s.

‘God Helping Us Out’

The first faces Erica saw at Children’s were those of Edythe Albano, MD, director of clinical oncology, and second-year oncology fellow Sue “Dr. Sue” Lindemulder, MD.

Dr. Albano, the attending physician working that October evening, ordered a second biopsy.

“We never begin treatment without being 100 percent sure,” she said.

The pathology that came back showed that Erica definitely had Ewing’s.

“It was the tiniest little tumor,” Dr. Albano said. “It is amazing it was discovered when it was. It could have been easily missed. She was lucky she became symptomatic so early.”

In fact, Erica said, Dr. Albano told her that her tumor was the smallest she’d seen in 19 years in practice.

“They said I shouldn’t have felt any pain with it that small,” Erica said. “I was lucky to have the pain. I have to believe it was God helping us out.”

Even more odd, Carol said, was that the pain disappeared as soon as Erica was diagnosed.

Because tumors from Ewing’s occur in the pelvic region about half the time, most patients with this rare type of cancer – just seven children in Colorado were diagnosed with Ewing’s in 2003 – don’t discover it until the tumor is much larger, Dr. Albano said.

The other 50 percent of tumors occur in the thighs, lower legs, ribs or upper arms, Dr. Albano said; in fact, Ewing’s can occur in almost any bone in the body.

Erica’s tumor was small and hadn’t spread, which increased her chances for a cure, Dr. Albano said. Erica also was lucky to have a type of Ewing’s that responds well to chemotherapy – her next step.     

“There were a lot of favorable things in her situation, which isn’t always the case,” Dr. Sue said. 

Because Children’s is affiliated with the Children’s Oncology Group (COG), patients have the option of enrolling in clinical trials. Erica and her family were presented with two options for her chemotherapy protocol: she could do the standard regimen of five chemo drugs every three weeks for a total of 42 weeks, or she could do the clinical trial protocol of the same chemo drugs every two weeks for a total of 28 weeks. Researchers hope a shorter interval between chemotherapy rounds will increase the cure rate, Dr. Albano said.

“I thought, ‘Would I rather spend more of my time doing this or less?’” Erica said, smiling. “I wanted to get it over with.”

But Drs. Sue and Albano explained that Erica’s name would be put into a computer with the names of all the other patients who wanted to participate in the trial and names would be drawn randomly.

This time, Erica got lucky.

Chemo the Easy Part

On Oct. 7, just six days after getting the news that she had cancer, that she would lose all her hair and most of her friends and miss nearly all of her junior year at Standley Lake High School in Arvada, Erica began the first of 14 rounds of chemotherapy.

For the first round, Erica received three medications through an IV – vincristine, cytoxan and doxorubicin.

Forty-eight hours later, she went home.

“We thought, OK, we can handle this,” Carol said.

What the family didn’t realize was that the hospital visits every two weeks would be the easy part.

“We didn’t realize she’d get fevers,” Carol said, which made Erica’s sessions with her in-home tutor difficult. “We’d come home and Erica would be sick for a couple of days with a fever and then we’d be back at the hospital for another three days. Then it was time for the next chemo round.”

Round Two was five straight days of two other chemo drugs – ifosfamide and etoposide – through Erica’s port, or a permanent IV, said Erica’s primary nurse, Heather Mellema.

After the first few rounds of chemo, Erica’s white-blood cell and platelet counts were low, so she needed a blood transfusion. Bone marrow, which produces platelets and white and red blood cells, is typically suppressed during chemotherapy, Dr. Albano said. When Erica’s white-blood cell count is low, it puts her at risk for infections that can be life-threatening, she said.

“We have to have her counts to a minimal level before we go ahead with the next chemo cycle,” she said. If doctors didn’t let Erica’s counts return to a certain level, chemo would cause them to drop even lower, increasing the likelihood of “significant side effects,” Dr. Albano said.

And sometimes Erica’s counts don’t return to the level they need to for the next chemo round to start, delaying her treatment, Carol said.

“Delays are built into the protocol,” Dr. Albano said, “but that’s part of what’s being evaluated in this trial – how realistic is it to give intensive chemo every two weeks?”

The delays are tough on everybody in the family, especially Erica’s parents, who always try to make sure one of them is with her in the hospital.

“We take a day off work thinking, OK, she’s going to start chemo,” Carol said. “But then it’s delayed. It’s really difficult. When this started, we told her that there might be times she would need to be alone. She was fine with it, but we didn’t realize how difficult it would be on her. We haven’t left her.”

And that support had a major impact on Erica’s treatment, Dr. Sue said.

“Her parents worry appropriately, but they try not to worry excessively,” she said.

Erica’s biological father, Rich Krahl, also has been there to support Erica, along with her best friend, Andrea Carlton, and the family’s church, Carol said.

In addition to the low counts, Erica was exhausted– she “huffed and puffed like an old person” when climbing the stairs, Carol said, and had painful sores in her mouth from the doxorubicin.

But the hardest part was yet to come: Erica would need surgery to remove the bone in her arm where the tumor had grown.

Continued>>>