Cancer is one of the great medical challenges of our time. Even with all the strides modern medicine has made, the best existing treatments often come with unimaginable challenges. These challenges become even harder when the patient is a child. Childhood cancer treatments are often the same therapies created for adults. With still-developing minds and bodies, there’s no doubt the treatment process can take a toll on a child, even with the best possible outcome. Childhood cancer research is years behind the research for cancer in adults, and experts all over the world are striving to fix that.
Dr. Edward Anders Kolb, MD, is a leader in these efforts. Dr. Kolb has been practicing oncology for 20 years, 15 of which he’s spent at Nemours. He’s the Director of both the Nemours Center of Cancer and Blood Disorders and the Nemours Center for Childhood Cancer Research. He splits his time between working with children and their families throughout the cancer treatment process, and looking for new treatment options to promise better outcomes for future patients.
A lot has changed over the last 30 years when it comes to pediatric medicine. Thirty years ago, pediatric oncology care was just beginning to become a more specialized field, rather than an aspect of medical care. More and more medical professionals were dedicating their lives to practicing pediatric medicine. It was during this time period in pediatric care that the Nemours Center of Cancer and Blood Disorders was founded.
“Over the last 30 years, we’ve seen the program grow dramatically,” Dr. Kolb says. “Just in the last three years there were seven new therapies approved for children with cancer, many of which can be very challenging to administer safely.”
These new therapies and treatment options mean higher demand for specialists. Nemours has met that demand, hiring qualified staff to keep up with the new advancements. Having team members who are highly qualified is a key element that makes Nemours the treatment powerhouse that it is today in the world of pediatric oncology.
An important founding principle that Nemours has leaned on from the beginning is that pediatric oncology care needs to be provided by pediatric specialists. This means every single aspect of care should be in the hands of people who have dedicated time to truly understanding children—specifically those with cancer and blood disorders. This applies not only to the physicians and nurses, but also the psychologists, therapists, social workers and everyone else on the team.
It’s clear that Dr. Kolb understands this principle and lives it out every day. He considers himself a “child at heart,” so the passion for pediatric care comes naturally to him.
“It’s so different,” Dr. Kolb says. “I mean, they’re children. The difference between child cancer care and adult cancer care is night and day.”
One of the biggest differences is the importance of doing everything under one roof. It’s not always a problem for an adult to drive to three different facilities on three different days for appointments and consultations. However, for a mother with three other children who need to be at school and soccer practice, that can become quite the task.
“We do everything in one spot,” Dr. Kolb explains. “We bring the care to the child. We bring the care to the family. We recognize how difficult it is for them to navigate the healthcare system.”
The other major challenge that comes with caring for children is that the side effects of treatment come with the possibility of lifelong challenges.
“By lifelong, we’re talking 70-80 years, not 5 or 10. So we need to be committed to reducing those risks as much as possible and identifying them early.”
Nemours has been successful over the years in this endeavor. In the 15 years that Dr. Kolb has been with the organization, Nemours has improved survival rates for certain pediatric cancer types to nearly 100 percent. Overall, more than 8 out of 10 kids with cancer will survive.
While this rate is a much better number than we would have seen 30 years ago, Dr. Kolb explains that it often comes at a high cost.
“We’re giving [some children] maximally intensive therapy. We’re giving them doses of chemotherapy and sometimes radiation that push the limit of what’s tolerable. That comes with a short-term risk for toxicity and a cost of potential long-term side effects…We have a long way to go.”
That’s where clinical research comes into play.
With great strides over the last 30 years in life expectancy and survival rates, the next step is improving quality of life for children coming out of cancer treatment.
“We have clinical trial opportunities for nearly every patient that walks through the door,” Dr. Kolb says. “Our goal is that all the patients we treat should benefit from care that’s been optimized based on experience of past patients, and the care that they’re receiving today is informing the care of future patients.”
This cycle, Dr. Kolb explains, is what drives progress in pediatric oncology. With research so far behind adult cancer research, constant studying and improvement during care is essential.
Dr. Kolb practices what he preaches. Along with directing the Nemours Center for Childhood Cancer Research, he also leads a disease committee within the Children’s Oncology Group, made up of experts from all over the world. The organization conducts the largest and most impactful clinical trials for children with cancer.
Dr. Kolb and Nemours also partner with the Leukemia and Lymphoma Society in the PedAL Master Clinical Trial. PedAL is an international collaboration working to help get the right treatments to the right children. It also involves genetic testing of every patient at diagnosis and at relapse in order to provide treatments that target cancer at the molecular level. The goal is to develop and distribute treatments that target cancer cells and not normal cells.
Nemours is also funded as a National Cancer Institute Community Oncology Research Program (NCORP). Thanks in part to this grant, there is only one children’s hospital in the nation performing more clinical trials than Nemours. Nemours is a leader in driving research forward which will create better outcomes for future children.
“To do all of that in the Delaware Valley is such a tremendous resource for our patients and families,” Dr. Kolb says. “And it all started with Rita Meek courageously setting up shop where there wasn’t one 30 years ago.”
The primary function of the Nemours oncology department is to deliver innovative care to patients and families close to home. It seems so simple. For those who have lived in the Delaware Valley their whole lives, Nemours is a constant. People have grown used to seeing the massive children’s hospital so close to home. But to the families the hospital serves, the promise of consistent nearby care is priceless.
“You just feel it,” says Rosa, a New Jersey mother of two who was forced to face every mom’s worst nightmare when her eight-month-old son was diagnosed with infantile leukemia. “I felt peace.”
She knew she had made the right choice when she arrived at Nemours and began to meet the pediatric oncology team.
“When I think about my son, I want nothing but the best for him. I want every chance possible to help him survive, to help him live, to help him thrive. And who knows what’s best for a child? A pediatric doctor.”
[Read more about Rosa and her son, David.]
“Children are not just small adults,” agrees Naomi, the mother of a child who was diagnosed and brought to Nemours at age five. “Their bodies are still in the midst of developing. Their brains, their internal organs, their reproductive systems…it’s all still developing.”
She adds, “There’s also a psychological component—their ability to process and relate to things, handle things, take medicine—that is very different from an adult.”
Naomi emphasizes the importance of research in the pediatric field.
“Dr. Kolb has been such an integral part of research that is trying to figure out ways to help these kids heal without hurting them. But funding is so under-available for pediatric cancer research that most of the drugs they’re using are ones that were approved for adults.”
In Naomi’s opinion, pediatric research should have much more funding. Childhood cancer specialists are saving the lives of children with few resources at their disposal.
“These heroes are taking so little and making the absolute most out of it.”
[Read more about Naomi and her son, Caleb, who is an ambassador for the Young Heroes 5K supporting childhood cancer research and patient services at Nemours.]
September is Childhood Cancer Awareness Month. To help raise awareness and funds to further childhood cancer research, visit the American Childhood Cancer Organization’s website.
To learn more about the research Nemours is doing, visit its research page online.
Related: Mothers of Childhood Cancer Patients Share Their Stories