Posted: Tuesday, September 24, 2013 6:00 am | Updated: 10:34 am, Tue Sep 24, 2013. By Liz Johnson Correspondent
Kellen Krajcer is only 2, but already he commands an army. At last count, his troops numbered 118 and growing.
On Sunday, Kellen’s Crusaders, as they call themselves, will march in the Four Seasons Parkway Run & Walk, an annual event that aims to raise money for the cancer center at The Children’s Hospital of Philadelphia.
In his short life, the Falls toddler has waged and won his own battle with cancer. His family wants others who are struggling with similar battles to know: No one fights alone.
Kellen was diagnosed less than a year ago with liver cancer. His mother, Heather Krajcer, noticed a hard bump on his side and mentioned it to his pediatrician.
Within hours of the doctor’s visit, the family huddled around Kellen’s bedside at Children’s Hospital in Philadelphia awaiting test results.
Kellen had a stage 3 hepatoblastoma, a liver cancer that affects one in 1 million children. The tumor was 11 centimeters, the size of a softball.
“It was like having a cantaloupe in a child’s body,” said his father, Carl Krajcer.
Because of the tumor’s size and location, Kellen’s surgeon wasn’t able to operate, so Kellen started immediately on an aggressive regimen of chemotherapy that required him to be hospitalized.
Chemo was a three-drug cocktail — Cisplatin, Vincristine and 5-FU. The regimen called for six treatments given over six months. Kellen would spend three days in the hospital for the first drug to be injected into his body. Then he’d be allowed to go home, but have to make trips for the half-hour to 45 minutes it would take to administer the second round of drugs. During the treatment, Kellen lost his taste buds, stopped eating, dropped weight and had to be placed on a feeding tube. “He still kept an amazing spirit. He always had a smile on his face,” said Carl.
After two months, Kellen had another CAT scan. The tumor had barely shrunk and now doctors were concerned he’d need a liver transplant. They decided to wait for another two more rounds of chemo to see if the tumor would react.
Those were the dark days, filled with uncertainty and powerlessness, recalled both Carl and Heather. As they worriedly paced the hospital corridor, they saw a poster for the Four Seasons Parkway Run & Walk.
“We said right then, ‘We’re doing it!’ ” said Heather. After four chemo treatments, Kellen had an MRI and his surgeon believed the tumor had shrunk enough that she could operate safely. In January, Kellen underwent what was a scheduled seven-hour surgery. But after three hours, the surgeon emerged. Heather and Carl were shocked. What had gone wrong?
“It was easier than she expected,” said Heather, with a sign of relief.
The surgery left him with a scar across his stomach that is barely visible nine months later. To be safe, Kellen underwent another two rounds of chemo between January and March, the height of the flu season, which meant he wasn’t allowed visitors during his hospitalization.
“It was so hard when they said ‘no kids allowed,’ ” recalled his 5-year-old sister Emery. “It seemed like 10 months.” Kellen’s last chemotherapy treatment was March 11. Shortly after, he went for a CAT scan. His doctor thought he saw another spot. Kellen’s bloodwork came back showing high levels of Alpha Fetal Protein — a protein that signifies the liver is regenerating, but can also mean the cancer is still active. A normal range is anything less than 12 nanograms per milliliters. Upon diagnosis, Kellen’s was 168,000. With Kellen’s AFP still so high, doctors told the Krajcers the cancer may not be gone.
“That was the toughest part,” said Carl. “We couldn’t sleep all that night.”
It turned out the spot was just a shadow on the scan. The elevated AFP was a sign the liver was regenerating. Kellen’s been in remission since April. A CAT scan in August was clean, and last week, Kellen’s AFP had dropped to 16. Raising funds for CHOP’s childhood cancer research organization through the parkway event has kept the family focused during the anguish of awaiting test results.
“We just hoped he’d be able to walk it with us,” said Heather. The question still remains: Will Kellen walk the event? Or will he run it?
“We can’t do anything about the CAT scans or the bloodwork, but this is something we can do,” said Carl.
Research for childhood cancer has netted some impressive results. Leukemia, for example, had a 5 percent survival rate 40 years ago; today, the survival rate is between 80 and 95 percent, said Dr. Julie Stern, a pediatric oncologist at Children’s Hospital.
“Kids have a much-better prognoisis; 80 percent will be long-term survivors,” said Stern. “We are nowhere close to that in adults.”
Three in five kids will have some after-effect from chemotherapy. In Kellen’s case, the Cisplatin caused hearing loss in the high-frequency range.
“We knew we had to do whatever, but at the time, it seemed so unfair. Hadn’t we been through enough?” said Heather angrily, fighting back tears.
Kellen’s hair has come back and he’s working with a teacher and speech therapist at the Intermediate Unit to learn to compensate for his hearing loss.
And then there’s the help he gets from his sister. The two played on the floor and sang a round of “Row, Row, Row Your Boat” last week, both rocking back and forth to the melody. The Krajcers say they’re grateful to the people who brought food, donated money and even pajamas. Their employers were generous with time off. Heather is a counselor for Neshaminy High School, while Carl works at Feasterville Flooring. “Between our family being so close and friends, without them, I don’t know how we’d get through last year,” said Heather. “(Then) people we don’t even know who did things for us, people who were connected through someone we might have known. It was overwhelming,” she said.
Carl is driven to raising funds for childhood cancer research, spending countless hours asking local businesses for support. This month, the Chick-fil-A in Trevose hosted a Kellen’s Crusaders Spirit Night, donating a portion of its sales to CHOP’s cancer center.
The Krajcers’ goal is to raise $10,000. They’re a third of the way there with 118 team members, nearly half of whom they’ve never met.
A graphic designer did a T-shirt that each team member will wear listing the donors and the Krajcer motto: “No one fights alone.”
“If we can help a family in the future, why not give back?” Carl said.
“If this happens to someone else, it will break my heart,” said Emery.
For more information on the event or to join or donate to Kellen’s Crusaders, go to http://giving.chop.edu. Falls family: No one fights cancer alone – phillyburbs.com: Local.