What Better Treatment Would Look Like For Our Families
If you asked ten cancer moms what "better treatment for our children" would look like, you'd get ten different answers. But there's an overlap in the middle that most of us would probably agree on.
I want to try to write that overlap down. Not as a wish list. As a picture of what's on the other side of the advocacy work we're all doing this month.
Shorter treatment
The current protocol for standard-risk pediatric acute lymphoblastic leukemia is roughly two to three years long, depending on the child's sex and specific protocol. Two to three years of appointments. Two to three years of infusions. Two to three years of a family calendar shaped around chemotherapy.
Better treatment would be shorter. Targeted therapies that finish the job faster. Immunotherapies that clear leukemia cells in months instead of years. A version of pediatric leukemia treatment where a family isn't organized around chemo for the majority of a child's early childhood.
Gentler drugs
Every category of side effect we spend our clinic days managing has a research angle attached to it. Steroid mood swings. Vincristine neuropathy. Methotrexate mouth sores. Anthracycline heart risks. Steroid bone effects. Long-term fertility questions.
Better treatment would be drugs designed with fewer of these effects. Not a magic pill. A generation of drugs calibrated for pediatric bodies from the start, tested in pediatric trials from the beginning, not adapted from adult indications after the fact.
Fewer late effects
60 to 90 percent of childhood cancer survivors develop at least one long-term health condition traceable to their treatment. By ages 40-49, 88 percent have at least one chronic condition. This is the price our current chemotherapies charge for survival.
Better treatment would drop those numbers. Fewer cardiac follow-ups. Fewer neurocognitive challenges. Fewer fertility conversations. Fewer secondary cancers. A survivor generation whose late-effects burden is measurably lighter than ours.
Precision medicine for pediatric cancers
Adult cancer treatment has moved dramatically toward precision medicine in the last two decades. Doctors identify the specific molecular signature of a patient's tumor, then match a targeted therapy to that signature. Some cancers that used to have grim outcomes now have specific drugs that work because they target the specific driver of that patient's disease.
Pediatric cancers have gotten some of this. Not enough. Better treatment would mean pediatric precision medicine at scale. A child gets diagnosed. The tumor is sequenced. The oncology team pulls from a menu of pediatric-specific targeted therapies calibrated to the exact molecular profile.
Faster clinical trial access
Pediatric cancer clinical trials have historically been slower and harder to fund than adult cancer trials. 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 hasn't fully closed the gap.
Better treatment would mean pediatric clinical trials that open sooner, enroll faster, and give more children access to promising new therapies while they're still in trial phase.
More treatments for rare pediatric cancers
The most heartbreaking corner of pediatric oncology is rare cancer. Diffuse intrinsic pontine glioma (DIPG). Ewing sarcoma. High-risk neuroblastoma. Rhabdomyosarcoma. Certain rare pediatric leukemias. For many of these, there hasn't been a real treatment advance in decades because the patient population is too small to attract private drug-development investment.
Better treatment would mean federal funding covering the rare-cancer research that private industry won't touch. Every child with a rare cancer deserves a treatment protocol built for their disease, not a decades-old regimen borrowed from a slightly different cancer.
Better survivorship support
Modern survivorship medicine is monitoring more than it's resolving. The follow-up appointments track for late effects because we know the older drugs can cause them. Better treatment would mean less monitoring is needed. It would also mean better survivorship interventions when late effects do appear — cardioprotective drugs, cognitive supports, fertility preservation options for children who don't have them today.
Family-centered infrastructure
This isn't a drug. It's a policy category. Better treatment includes better hospital design. Better family support during long inpatient stays. Financial assistance that scales with the actual cost of caring for a child through years of treatment. Federal parity in mental health coverage for cancer families.
Better treatment includes the whole system around the treatment.
How to be part of the movement toward this
None of this is going to arrive in a single announcement. It's arriving in pieces, over years, driven by advocacy at every level.
Federal funding advocacy. Private research funding. Awareness among the general public. Pressure on the FDA and NIH to prioritize pediatric research. Continued family voice at every advocacy day, congressional office visit, and policy conversation.
Every check to St. Baldrick's Foundation, Alex's Lemonade Stand Foundation, the National Pediatric Cancer Foundation, CureSearch, or CURE Childhood Cancer is a small contribution to this future. Every letter to a senator or representative. Every social share. Every conversation you have with someone in your life who didn't know the drugs our children take are older than we are.
For the family reading this
The children in treatment today deserve better tomorrows.
That's the sentence. That's what our advocacy is aiming at. That's the answer to "why are we doing this?" when the days get long.
The picture above is the tomorrow we're aiming at. It's real. It's possible. It's what happens when a country decides that pediatric cancer research funding matches the size of the pediatric cancer problem.
We'll get there together, or we won't get there at all.
Dina
Mom of Max | Founder, Maxwell’s Toy Shoppe
Childhood Cancer Advocate 💛
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