Editor's note: Noelle Zechman is one of the "Miracle Kids" involved in this weekend's Children's Miracle Network celebration.
DANVILLE - Todd Zechman gets very emotional when he shares the story of his daughter Noelle's battle with cancer. The subject brings a rush of emotion as he recalls watching his 18-month-old daughter fight for her life. The times, dates and details play through his head like a bad TV rerun.
Being a childhood cancer survivor himself and having watched his six uncles all die of cancer, Todd knew the news was not good when Noelle's doctor called him at work at 11:45 a.m. Aug. 20, 2006.
"The doctor said I needed to get up there right away," he said. "On the way up, I just knew it. At that point, I knew my worst fears were coming true."
Noelle had a protruding belly but Todd hoped that she was just getting a little chunkier before hitting a growth spurt. That hope washed away when the doctor showed Todd and his wife Tiffany an x-ray of Noelle's abdomen revealing a large tumor in her tiny belly. The pediatrician told the Zechmans, of Winfield, that they needed to go to Geisinger.
The Zechmans' first contact at Geisinger Janet Weis Children's Hospital was Dr. Michal Miller, pediatric hematologist/oncologist. He examined Noelle and ordered a CAT scan of her abdomen. The CAT scan revealed an enormous mass, nearly 6 inches in circumference, about the size of a soccer ball.
"Her belly was growing about 2 centimeters a day, because the tissue inside the tumor was bleeding into it," Dr. Miller said. "All her blood was going into that tumor and blowing it up like a balloon. It wasn't exactly tumor growth but the tumor was growing in size."
"Her biggest belly size was around 86 centimeters," Todd said. "It was so difficult looking at my 18-month-old child with her looking like she was pregnant with triplets."
Chemo, then surgery
The location of the tumor made it impossible for surgical removal. It had wrapped itself around one of the large blood vessels that pumps blood to the lower half of the body. Miller ordered a biopsy and Noelle began chemotherapy in an effort to shrink the tumor and stop the bleeding. Her condition was so serious Noelle was placed in the Pediatric Intensive Care Unit.
Noelle received nearly a dozen blood transfusions to counter the volume of blood that was flowing into the tumor.
"The tumor was so large that I worried she would not have enough room in her chest to take a breath," Miller said.
Getting the results from the biopsy took a considerable amount of time. The cancer growing inside Noelle was so rare that the specimen was sent to pathologists across the country. Finally after several weeks, it was determined that Noelle had undifferentiated sarcoma, a rare tumor with only 200 diagnoses a year.
"We did pretty intensive chemotherapy with Noelle and it lasted a little more than a year," Miller said.
Noelle stayed in the hospital for one and half months, because Miller wanted to see some improvements before allowing her to go home. The chemotherapy Noelle received could not be given as an outpatient, so every three weeks, Noelle and her parents would come to the hospital for the treatment, staying three to five days.
"It's hard for people to understand what we went through," Todd said. "Watching our child battle this sickness - the throwing up, losing weight and losing her hair. To watch her go from healthy, robust, full-faced to bald-headed, skinny, eyes sunken in her head, ribs showing and not being able to do anything.
"I held her at times when I swore she was taking her last breath. I thought for sure at some moments I had felt her last heart beat or heard her last breath," he said.
While at home, Todd and Tiffany gave Noelle Neupogen shots to help her production of white blood cells. They needed to feed her through a feeding tube and they were trained in CPR in case her heart stopped or she stopped breathing.
After three cycles of chemotherapy treatment, the tumor had shrunk enough for surgical removal.
"When the tumor came out, it was still rather large. It was 2 1/2 pounds in weight," said Miller.
After the tumor was removed, Noelle continued her chemotherapy and had daily radiation treatments from January to April 2007.
"The chemo and radiation always took a toll on her physically. It was a good while until we saw a turnaround, but little by little she started getting better and becoming more active," Todd said.
"I think the chemotherapy was harder on Noelle's parents than on Noelle. Mom and Dad never left her bedside," Miller added. "Once the tumor had shrank enough to allow her to take deep breaths more easily, she never stayed in bed and always wanted to be in the playroom."
More issues
Noelle's hair soon grew back and she began gaining weight. She only needed to see Miller for follow-ups, but during one of those appointments in 2012, it was discovered that Noelle had a lump on her thyroid. It turned out to be cancer.
"Fortunately the cancer had stayed in her thyroid. We were able to remove it and put her on thyroid replacement medication. She did not need any radiation or chemotherapy treatments," Miller said. "Her parents were devastated, but Noelle did not complain. She did what she had to do and went back to being a happy and active kid."
Since then Noelle is a normal, smiling, bouncy 9-year-old. She currently is an A /B student in fourth grade, she likes horses and says her favorite subject is eating.
"She definitely likes to eat," Tiffany said.
She recently began having discomfort in her back and traveled to Geisinger to have it examined. An X-ray showed a 30 to 35 degree curvature in her spine, the beginnings of scoliosis. Miller says the condition is a side effect of Noelle's radiation treatment, explaining that it weakened some of the muscles in her back. One side is stronger than the radiated side.
"Scoliosis is a common long-term side effect of radiation and develops as the child grows," Miller said. "She may need bracing and surgery to straighten her spine. We will continue to monitor her for late effects from her therapy, but she should do very well. It has been more than 7 years from her last chemotherapy, and it is quite unlikely that her cancer will come back."
Like family
The Zechmans were very appreciative of the way the doctors, nurses and staff cared for not only Noelle but them as well during their hospital stays.
"They were really great and treated us like one of their family," Tiffany said. "There were so many parents who had loved ones up there."
"When she was sick, they were always there. They never made us feel unwelcome," Todd said of the staff.
They also were very grateful for Tiffany's parents and grandparents who took care of Noelle's older brother, Noah, during their time at the hospital.
"He was starting preschool and they would pick him up, get him dinner and get him off to school the next day," Tiffany said.
Noelle has a huge collection of Beenie Babies at her home, provided by the Child Life Department and pediatric sedation. The stuffed animals are one of the items funded by Children's Miracle Network donations.
"Every time she would have a procedure, she would get a Beenie Baby. She has a huge box full of them," Todd said. "To look at her now, you can't believe how many treatments and procedures that girl went through."
"She loves those Beenie Babies," Tiffany said.
Todd shared the story of Christmas Eve 2006 while Noelle was in the hospital. Woody Wolfe, an entertainer who regularly visits the hospital to entertain the children, was going from room to room singing Christmas carols with the kids. When he came to Noelle's room, he sang "The First Noel."
"There wasn't a dry eye in the whole place," he said. "It was beautiful."
It isn't just the relationships with the Geisinger employees that the Zechmans cherish but their relationships with the other families with children in the hospital.
"We not only saw what our daughter went through but you are with those people day in and day out. You see the other mothers and fathers with their children, too," Todd said. "We are very fortunate that Noelle has made to this point in her life. Four of the families buried their children while we were going through this. We keep in contact with each other. It's a hell of way to be friends with somebody."
On top of the worry is the added financial stress that comes from having a child in the hospital for an extended period time, according to Miller.
"The money spent on gas to physically get here; money for breakfasts, lunches and dinners," Miller said. "Vacation time gets eaten away very quickly. Then people get docked in pay because they need to be at the hospital to take care of their child."
The Zechmans agreed with Miller.
"We lived at the hospital. It's hard for people to understand the financial drain an illness like cancer puts on a family," Todd said. "We never recovered financially, but that is secondary to her health."
Miracle kid
Miller said Noelle's strength and internal drive are the two things that make her a miracle child.
"Today with all of this behind her, you can see she has not been left with bad or traumatic memories," said Miller. "She has transformed those memories into a love of life and an attitude that she can do anything and everything."
The Zechman's cant's say enough about the care they received at Geisinger Janet Weis Children's Hospital and were humbled for Noelle to be selected as a Miracle Kid.
"Being a miracle kid is a nice honor but something no one should ever have to get," Todd said. "I hope people see what these children go through and something good comes out of it."
Donations to Children's Miracle Network at Geisinger help fund many of the Child Life activities offered for patients at the children's hospital. Donations also were used for monitors that were used in the daily care of Noelle.