One of the surprising things about becoming a cancer parent is how much time you end up talking with your child's oncology team. Over three and a half years, my husband and I had hundreds of conversations with our son's pediatric oncologists, fellows, nurse practitioners, nurses, and child life specialists.

Somewhere in there, I started asking a specific question. What would you change about pediatric cancer treatment if you could change one thing?

The answers I got, over the years, have shaped a lot of how I think about advocacy. I want to share the themes here, because they aren't the answers a family thinks about on their own.

"We need more time for research"

Almost every pediatric oncologist I've asked has mentioned funding and time. Not for their own careers. For the field.

Pediatric oncology is a clinical specialty that runs on a research base that hasn't been resourced at the level the field needs. The clinicians are treating children with the tools they have. The researchers are working to build the tools of the next 10 years. Both are stretched. The federal funding has not kept pace with what either side of the field needs.

When an oncologist tells you that pediatric cancer research needs more funding, they're not making an abstract policy argument. They're telling you they'd like to be able to offer their patients better options than they currently have.

"We need newer drugs"

The drug age problem is one that clinicians live with every day. The oncologists prescribing vincristine, methotrexate, and 6-mercaptopurine know when those drugs were developed. They know the side effect profiles by memory. They know which children will have hard steroid weeks and which will develop neuropathy that lingers into adolescence.

What they want, and what many of them will tell you if you ask, is a next generation of pediatric cancer drugs designed for pediatric bodies from the start. Targeted therapies. Immunotherapies. Precision medicine calibrated for the specific biology of pediatric cancers, which is different from adult cancer biology in ways that matter.

"We need broader clinical trial access"

Pediatric clinical trials are harder to run than adult trials. The patient population for any given pediatric cancer is smaller. The families are geographically scattered. The trial infrastructure is under-resourced.

Many pediatric oncologists have told me they wish they could enroll more of their patients in trials of promising new therapies. Some can't because the trial isn't open at their institution. Some can't because their patient doesn't quite meet inclusion criteria. Some can't because the trial isn't open in the pediatric age range at all.

The RACE for Children Act, which took effect in 2020, was designed to help close this gap by requiring adult cancer drug developers to plan pediatric studies when the molecular target is relevant. It's helping. It's not enough.

"We need to talk about late effects earlier"

Every oncologist I've asked has said some version of this. The conversation about late effects tends to come up toward the end of treatment or in survivorship clinic. They wish they could have that conversation earlier, and with more support, because it shapes the choices families make about surveillance and adult care.

This is a family communication issue that oncologists can't solve on their own. It requires research (better data on what to expect), survivorship program funding (more clinics, more staff), and advocacy (survivor family voices in shaping the guidelines).

"We need better mental health support for our families"

Pediatric oncology is one of the medical specialties where the whole family is the patient. The parents. The siblings. The extended family. Every oncologist I've asked has mentioned the gap between the mental health support families need and the mental health resources their hospital can provide.

Federal parity for mental health coverage for cancer families would help. So would more research on family-system interventions in pediatric oncology. So would more social work staffing at every level of pediatric cancer care.

"We need better representation of our children in decision-making"

Some of the most important pediatric cancer policy conversations happen in rooms without pediatric oncology in them. NIH funding decisions. FDA review conversations. Insurance coverage debates. Hospital investment priorities. Pediatric oncologists have historically had less voice in these rooms than adult oncology.

The field is changing. Groups like the American Society of Pediatric Hematology/Oncology and the Children's Oncology Group are increasingly active in policy conversations. Family advocacy organizations are amplifying clinician voices. It's moving. It could move faster.

"We need families to keep pushing"

Almost every oncologist I've asked has said, at some point in the conversation, some version of "and keep advocating." Not as a soft ask. As a specific request.

Family advocacy has moved every meaningful piece of pediatric cancer policy in the last 30 years. The Childhood Cancer STAR Act, passed in 2018, was moved by family advocacy. The RACE for Children Act was moved by family advocacy. Every incremental increase in NIH pediatric cancer research funding has been moved by family advocacy.

When clinicians ask us to keep pushing, they mean it. They can't attend every congressional hearing. They can't be at every advocacy day. They can and do provide expertise, testimony, and support behind the scenes. What they need from the family community is the visible, sustained public pressure that moves elected officials.

What I've come to believe

The pediatric oncology clinicians I've talked with over four years are some of the most committed, thoughtful, patient professionals I have ever met. They are also, most of them, quietly frustrated by the ceiling that federal underinvestment in pediatric cancer research has placed on what they can offer their patients.

Advocacy is a partnership. Families and clinicians are on the same team. When we push for more federal funding, more research, more clinical trial access, and better late-effects support, we are pushing for the tools our care teams are already asking for.

For the cancer family reading this

The next time you're at a clinic appointment and you have five extra minutes, ask your child's oncologist what they'd change about pediatric cancer treatment if they could change one thing. The answer will be worth writing down.

You'll walk out of the room a slightly different kind of cancer parent than you walked in. And that shift is where advocacy starts.

Dina
Mom of Max | Founder, Maxwell’s Toy Shoppe
Childhood Cancer Advocate 💛

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What Pediatric Oncologists Would Change If They Could