Childhood Cancer Awareness: Lack of funding stalls important advancements in treatment

The month of September is Childhood Cancer Awareness Month but for families with a little one battling cancer, their fight isn't just for four weeks, but years.

"I ask people to take a second and just think about what it would be like to be sitting in an oncologist's office with your spouse waiting for a diagnosis, but that diagnosis isn't for you. It's for your four-year-old child," said Kay Koehler, President and CEO of CureSearch, a national organization with a mission to find a cure for childhood cancer.

While childhood cancer is rare, it is a harsh reality for many parents, including a Sgt. Bluff family whose young daughter is battling acute lymphoblastic leukemia.

"There are so many things that come with getting a diagnosis that your child has cancer," said Erin Edlund. We met the Edlund family, including their youngest Lolo who is in the midst of her cancer treatment, in the summer of 2021. Lolo's cancer journey brought her to Omaha's Children's Hospital, one of the few medical centers in the region that specializes in treating childhood cancer and other illnesses.
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When a child is impacted by cancer, that impacts the next the 70-80-90 years of their life," said Dr. Acquazzino. "There's just so much potential." Dr. Melissa Acquazzino and Dr. Jill Beck are two of the leading oncologists at Children's Hospital and have seen firsthand how current cancer treatments can ravage a young child's body.

Learn more about Children's Hospital of Omaha here.
"Oftentimes cancer in childhood is very aggressive and we use very intensive treatments to get them into remission and cure," said Dr. Aquazzino.

PART 1: Meet a Sgt. Bluff Family in the middle of the cancer fight, and some of the doctors who are on the leading edge of new treatments.

While treatments are advancing, those advancements are not happening fast enough. "We have made strides in terms of treatment and successes in curing," said Dr. Beck, "but it is still the highest cause of death by disease in children."

"Most people think about cancer research as cancer research and that adult cancer, probably those drugs are just applied to children and it doesn't work that way for many reasons," said Koehler. "(We focus) on driving new drug development for kids with cancer and we want those therapies to be less toxic than the current standard of treatment."

Childhood Cancer is different from adult diagnosis because children's bodies are still growing. While childhood cancer is considered rare, the treatments made specifically for their little bodies are even more so.

"You put chemotherapy treatment into a body that's four years old and growing," said Edlund, "that's a pretty terrifying prospect that you don't know what really effect that's going to have and for every kid, it's going to be different because we all grow at different rates."

"If your six-month-old is diagnosed with cancer, they can't take a pill," said Koehler. "How are you going to give them therapy, right? It's everything from the logistics to the treatments themselves."

CureSearch brings new treatments into clinical trials, from lab development to treatment deployment.

PART 2: Lack of funding stalls important advancements in treatment

"I think one of the challenges is that the treatments that we're using are still old and they have a lot of side effects," said Dr. Beck. "I think we are behind, in terms of pediatric cancer the average is about six years after a medication or a treatment is introduced in adults. That it is then introduced in kids."

Children's Hospital works with several clinical trials thanks to organizations like CureSearch and hospitals across the nation, with a shared goal of finding treatments, and a possible cure, for kids fighting these diseases. One of the biggest hurdles they face is finding the funding needed to get the research up and off the ground.

"In pediatric cancer research, we receive a very small percentage of the money that's out there that goes towards cancer research," said Dr. Acquazzino. "The majority goes to the adult world."

CureSearch is funded solely from donations and fundraisers and doesn't receive any federal assistance. Koehler says they are strict in where they put their resources. Each research study goes through a rigorous cycle before CureSearch puts funding behind it to get it to the clinical trial stage. They have a success rate of 60%.

"It costs about $800 million I've been told to bring a drug to market," said Koehler, "so we are solely dependent on donors who are interested in making an impact with their investment in childhood cancer."

Find out more about CureSearch here.
For the team at Omaha Children's Hospital, finding the right treatment and even a cure isn't their only goal. "What we're really working to do is kind of all sides of it," said Dr. Beck. "So decrease trying to figure out why kids get cancer and decreasing that, and then also working on the other side to get better, more effective treatments that have fewer side effects so that these kids can grow up to be happy healthy adults."

"Because pediatric cancer is rare, we band together and we work with the children's hospitals around the country to standardize how we treat kids with certain diagnoses," said Dr. Acquazzino, "and then to ask questions about how we can improve treatment both in terms of improving cure rates, but also in decreasing those long term late effects that we can see from our cancer treatment."

CureSearch not only wants to find the cure for cancer and develop treatments that aren't going to cause these kids more health problems down the road, leaving parents constantly looking over their shoulders wondering when the next shoe will drop.

"For us, it's about how do we move things along faster? How do we help children lead long and healthy lives when we're talking about an additional 60-70 years of life left for them?" said Koehler. 'We need to not just "cure" children and I use the word "cure" in quotes. We need to ensure that they don't have to look over their shoulders for the rest of their life wondering if they're going to have congestive heart failure at 23 years old. That's what we're focused on."

Children's works to get their patients into the best clinical trials possible, but they also strive to make the journey through a cancer diagnosis and treatment as easy as possible for the child and their family. For families of kids diagnosed with cancer, that diagnosis impacts everyone in different ways, from the parents to their siblings. This is why, at Children's, they take a team approach to treatment.

"I think one of the things with pediatric cancer, in general, is it really is a team sport and that that there is no one person in our group that can do this alone, other than the patient but that we're all here to support those kids," said Dr. Beck.

Dr. Acquazzino agreed, "We have a really big team of people that think about our patients head to toe and how we can support not only them but their families." A cancer diagnosis can often be hardest on the parents, both mentally and emotionally, seeing their child go through tough treatments and long stays in the hospital.

"I find that parents often don't know how to sort of trust their parenting anymore," said Dr. Beck, "not for any fault of their own. But because it's unexpected and it's rare and it's not on your radar until it's right there and happening to you."

"When I think a lot of what parents tell me is the club that they never imagined that they want to be in and that they would prefer not to have been a member of." That club is the reality for far too many families and the news that your child has cancer is just the beginning of an incredibly long journey," which the Edlund's are right in the middle of.

"While my daughter's hair is growing back and while we have gotten through probably the hardest part of her treatment, we are still in the midst of treatment," Edlund said. "Today is day 505 And we have 311 days to go. Her end date is August 6, 2023. We are not even close to being done with this journey. We will always live with the fear that she could face relapse.

"We will always live with the fear that the treatment may have caused her to have other underlying health conditions. And that's an enormous burden as well."
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