30 Years of Pediatric Cancer Treatment in Delaware

Adobe Stock | Konstantin Yuganov

In addition to providing excellence in pediatric cancer care, Nemours leads research efforts to improve outcomes for future children and families.

Cancer is one of the great medical challenges of our time. Despite all the advances that modern medicine has made, the best existing treatments often come with unimaginable challenges. These challenges become even more difficult when the patient is a child. Cancer treatments in children are often the same therapies developed for adults. Since the mind and body are still developing, there is no doubt that the treatment process, even with the best possible outcome, can take a toll on a child. Childhood cancer research lags behind adult cancer research by years, and experts around the world are striving to rectify this.

dr Edward Anders Kolb, MD, is leading this effort. dr Kolb has been in oncology for 20 years, including 15 years with Nemours. He is director of the Nemours Center of Cancer and Blood Disorders and the Nemours Center for Childhood Cancer Research. He divides his time between working with children and their families throughout the cancer treatment process and finding new treatment options to promise better outcomes for future patients.

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30 years of growth and change

A lot has changed in pediatrics over the past 30 years. 30 years ago, pediatric oncology was just beginning to become a specialty rather than an aspect of healthcare. More and more medical professionals devoted their lives to paediatrics. During this time in pediatrics, the Nemours Center of Cancer and Blood Disorders was formed.

Dr Kolb

“Over the past 30 years, the program has grown dramatically,” says Dr. Kolb. “In the last three years alone, seven new therapies have been approved for children with cancer, many of which can be very difficult to use safely.”

These new therapies and treatment options mean a greater need for specialists. Nemours has responded to this demand and hired qualified staff to keep up with new advances. Highly qualified team members are a key element that makes Nemours the treatment center it is today in the world of pediatric oncology.

An important rationale that Nemours has relied on from the start is that pediatric oncology must be delivered by pediatric specialists. This means that every single aspect of care should be in the hands of people who have taken the time to really understand children – especially those with cancer and blood disorders. This not only applies to the doctors and nurses, but also to the psychologists, therapists, social workers and everyone else in the team.

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You notice that dr. Kolb understands this principle and lives it every day. He considers himself a “kid at heart”, so his passion for pediatrics comes naturally to him.

“It’s so different,” says Dr. Kolb. “I mean, they are children. The difference between treating children with cancer and treating adults with cancer is day and night.”

One of the biggest differences is the importance of doing everything under one roof. It is not always a problem for an adult to travel to three different facilities on three different days for appointments and consultations. However, for a mother with three other children who have to attend school and soccer practice, it can be quite a task.

“We do everything from a single source,” explains Dr. Kolb. “We bring care to the child. We bring care into the family. We know how difficult it is for them to navigate the healthcare system.”

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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 life we ​​are talking about 70 to 80 years, not 5 or 10. So we have to work to reduce these risks as much as possible and to identify them early on.”

Nemours has been successful in this endeavor over the years. In the 15 years that Dr. Kolb was with the organization, Nemours has improved survival rates for certain pediatric cancers to nearly 100 percent. Overall, more than 8 out of 10 children with cancer survive.

Although this rate is much better than it was 30 years ago, Dr. Kolb that it is often associated with high costs.

“We give [some children] Maximum intensive therapy. We give them doses of chemotherapy and sometimes radiation that are almost unbearable. That comes with a short-term risk of toxicity and the cost of potential long-term side effects… We still have a long way to go.”

This is where clinical research comes into play.

Nemour's childhood cancer

Adobe Stock | Konstantin Yuganov

The role of clinical research

With major advances in life expectancy and survival rates over the past 30 years, the next step is to improve the quality of life for children after cancer treatment.

“We have clinical trial opportunities for almost every patient that walks through the door,” says Dr. Kolb. “Our goal is that all patients we treat benefit from care that has been optimized based on the experiences of previous patients, and that the care they receive today influences the care of future patients.”

This cycle, explains Dr. Kolb, drives advances in pediatric oncology. As research to date has lagged behind adult cancer research, constant studies and improvements during treatment are essential.

dr Kolb lives what he preaches. In addition to leading the Nemours Center for Childhood Cancer Research, he also chairs a disease committee within the Children’s Oncology Group, made up of experts from around the world. The organization conducts the largest and most effective clinical trials for children with cancer.

dr Kolb and Nemours are also collaborating with the Leukemia and Lymphoma Society on the PedAL master clinical study. PedAL is an international collaboration working to get the right treatments to the right children. It also includes genetic testing in each patient at diagnosis and at relapse to provide treatments that target cancer at the molecular level. The goal is to develop and commercialize treatments that target cancer cells rather than normal cells.

Nemours is also funded as the National Cancer Institute Community Oncology Research Program (NCORP). Thanks in part to this grant, there is only one children’s hospital in the country that conducts more clinical trials than Nemours. Nemours is at the forefront of advancing research to achieve better outcomes for future children.

“Doing all of this in the Delaware Valley is a tremendous resource for our patients and families,” says Dr. Kolb. “And it all started when Rita Meek bravely opened a shop where there wasn’t one 30 years ago.”

Making a difference in the Delaware Valley

The primary mission of Nemours’ oncology department is to bring innovative care to patients and families close to home. It seems so easy. For those who have lived their entire lives in the Delaware Valley, Nemours is a constant. People have gotten used to seeing the huge children’s hospital so close to where they live. But for the families the hospital serves, the promise of consistent care close by is priceless.

childhood cancer

Rosa & David

“You can just feel it,” says Rosa, a New Jersey mother of two who was forced to face every mother’s worst nightmare when her eight-month-old son was diagnosed with childhood leukemia. “I felt peace.”

She knew she made the right choice when she arrived at Nemours and began to meet the pediatric oncology team.

“When I think of my son, I only want the best for him. I want every possible chance to help him survive, help him live, help him thrive. And who knows what’s best for a child? A pediatrician.”

[Read more about Rosa and her son, David.]

Naomi and Caleb

Naomi & Caleb

“Kids aren’t just little adults,” agrees Naomi, the mother of a child who was diagnosed at age five and brought to Nemours. “Their bodies are still in the middle of development. 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, to deal with things, to take medication — that’s very different from that of an adult.”

Naomi emphasizes the importance of research in the pediatric field.

“DR. Kolb has been such an integral part of the research trying to find ways to help these children heal without hurting them. But funding for childhood cancer research is so inadequate that most of the drugs that they use are those approved for adults.”

In Naomi’s opinion, pediatric research should get much more funding. Specialists in childhood cancer save the lives of children with few means.

“These heroes take so little and make the absolute best 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 Month. To raise awareness and funds for further childhood cancer research, visit the American Childhood Cancer Organization website.

To learn more about the research Nemours is conducting, visit his research page on-line.

See also: Mothers of Childhood Cancer Patients Tell Their Stories

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