Article By: Bristol Mealor
Cover Image Provided By OU Health
Most childhood cancers’ causes are still unknown — that’s the bad news. The good news is that survival rates have improved hugely.
In recent decades, there has been remarkable progress in cancer treatment, leading to an 85% five-year survival rate for children diagnosed with cancer, a big increase from the 58% rate recorded in the mid-1970s, when childhood cancer was too often a death sentence.
Dr. Renee McNall-Knapp, a pediatric oncologist-hematologist with Oklahoma Children’s Hospital OU Health, has seen knowledge develop, keeping more cancer-stricken kids alive. But, after billions of dollars spent over decades of research, ultimate answers still elude doctors.
Answers such as what causes a child’s body to rebel against itself.
Mysterious causes
“About 10% of them (cancers), or 12%, are related to inheritable things. So you inherit the likelihood of getting cancer from one of your parents, or both of your parents. So about 10 to 12% of our cancers are related to that. Still, the rest are related to a genetic change in a normal cell that makes it more than one genetic change,” McNall-Knapp explained.
In recent years, the five-year survival rate was 83.2% for babies, 87.8% for kids 1 to 4 years old, 85.7% for kids 5 to 9 years old, 85.5% for kids 10 to 14 years old and 87.3% for teens 15 to 19 years old.
This progress is attributed to a commitment to improving outcomes for children and young adults with cancer and genetic tumor predisposition syndromes through applied research. Also, specialized pediatric cancer centers offer expert diagnosis and treatment for childhood cancers and related issues. And, apart from conventional treatments like chemotherapy, radiation therapy and surgery, there are advanced options such as transplants and cellular therapy, cooperative clinical trials and other investigational treatments available.
The marked improvement in pediatric cancer survival is one of the great success stories of modern medicine.
“It is important to know that most of our cancers are curable, especially if caught early, before it has spread to other places. So, again, if you have something that’s acting unusually, you know, pain that is not getting better. Anything you should follow up on and try to get a diagnosis earlier than later. Because that makes our chances of beating this much better,” Mcnall-Knapp said.
Parents are a child’s first line of defense against childhood cancer, because catching it early is crucial.
Tammy Cox was one such parent.
Cox knows most people haven’t met a childhood cancer survivor. That’s why she wants you to meet her son, Blaise, and why she shared her story.
‘It was sudden’
Blaise is the survivor of stage 2 Wilms tumor, a type of pediatric kidney cancer. Before he was diagnosed, cancer was never on the family’s radar. His tumor ruptured, and that’s how doctors discovered it.
On a Monday, Tammy and Blaise ended up at the ER, where doctors did a CT scan and found the tumor. Later that week, doctors cleared him for surgery and were able to remove the cancer, which hadn’t spread elsewhere. They took the boy’s entire kidney as a precaution. He had a 23-week journey with chemo, as well as radiation.
He is almost five years into remission. But the Coxes can never fully let down their guard.
“It was sudden and it was like he was angry at the rapid decline that he wasn’t able to do things,” Tammy remarked at how Blaise was affected by the Wilms tumor.
Tragically, however, not every family is as fortunate as the Coxes.
My family was one of those unlucky ones.
Bridget’s story
My sister, Bridget, was diagnosed at 4.5 years old. She was always to tiny. We found out she had a tumor in May 2008. She had an 18-hour brain surgery the following week for an optical pathway glioma, a type of brain tumor that arises along the nerve that connects the eye to the brain.
The surgery nicked her left optic nerve, damaging her vision. She started the first of seven chemos three months after finding the tumor. Bridget underwent seven chemos, three clinical trials and six weeks of proton radiation to her brain.
The chemo damaged her kidneys and heart. The tumor affected her eyesight the most. She was legally blind in her left eye, had tunnel vision and was color blind in her right eye by the time she was 10.
The only thing that stopped the tumor from growing was the proton radiation. We were fortunate that we had a wonderful team of doctors to help care for her. They originally thought that the tumor wouldn’t prove fatal, and it didn’t, technically.
Radiation kills tissues good and bad. She was diagnosed with radiation necrosis in early May 2018. The necrosis tissue spread throughout her brain in less than a month.
Safe place, scary time
Our home away from home was the Toby Keith Foundation’s OK Kids Korral, located down the street from the hospital. For many families who must come from out of town for a child to receive cancer treatment, this was a safe place to stay.
Families enjoy the amenities of home, including 12 private suites, four daytime rooms, a wing for children with weakened immune systems, indoor and outdoor dining areas, a laundry room, a movie theater, a game room and teen area, and indoor and outdoor play areas.
The organization does whatever it can to ease the burden of being away from home while a child is being treated. There is no charge to stay.
Oklahoma Family Network
“Our main mission is to provide peer support to parents with a child with a diagnosis. With any kind of diagnosis,” Cox said.
Oklahoma Family Network is also a big part of the cancer family journey. They offer help and support to those who have not just received a cancer diagnosis but those who spent time in the NICU or were born premature, have physical disabilities, rare or undiagnosed conditions, autism, cerebral palsy, cystic fibrosis, down syndrome, mental health diagnoses or behavioral health concerns. Their main mission is to provide hope, support, encouragement, and assistance to those who need it.
Caring for others
Stories such as these two hold close to my heart. Hearing the Cox family’s story, and my personal experience with cancer, have pushed me into a career of wanting to help others. The support from doctors like McNall-Knapp and the pediatric oncology nurses makes this journey easier. Being in a career such as nursing means I can help others such as those in the stories. So my plan is to study nursing when I graduate. If you ever have the misfortune of finding your son or daughter in a pediatric cancer unit, I hope to be the one treating them.