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This information is provided to help our friends and family better understand the terms we share. It is general educational information and should not be used as personal medical advice.
September
The gold ribbon is the symbol for childhood cancer. Gold was chosen because children are precious — and remarkably strong.
Childhood cancers like ATRT are rare, different from adult cancers, and need research focused on kids. Every September, families, care teams, and friends wear gold to raise awareness, support pediatric research, honor children in treatment — like Rowen — and remember those who fought before.
Brain cancer in children is different from brain cancer in adults. Children are still growing and developing, and pediatric brain tumors often have completely different biology and genetic changes than adult tumors. They are not simply smaller versions of adult cancers.
Treatment is also different. Pediatric neuro-oncology teams have to treat the cancer aggressively while protecting a developing brain and body as much as possible.
ATRT (atypical teratoid/rhabdoid tumor) is a rare, aggressive type of embryonal brain tumor. Embryonal tumors develop from very young, immature cells and are seen primarily in babies and young children.
~70
children and teens in the U.S. are diagnosed with ATRT each year — fewer than 100 nationwide, most of them babies and toddlers.
Sources: Central Brain Tumor Registry of the United States (2005–2021 data); St. Jude Children’s Research Hospital.
ATRT grows quickly and can spread through the cerebrospinal fluid (CSF) around the brain and spinal cord. Most ATRTs involve changes in a tumor-suppressor gene called SMARCB1/INI1, which is one reason molecular and genetic testing are an important part of diagnosis.
ATRT is a serious and difficult cancer to treat, but children can and do survive it, and outcomes have improved as treatment has become more intensive and specialized.
There isn't one number that can predict what will happen to an individual child. Prognosis depends on factors including age, whether the cancer has spread, the tumor's molecular subtype, how much can be safely removed and, importantly, how the cancer responds to treatment. Modern treatment typically combines chemotherapy, surgery and sometimes radiation.
Treatment for ATRT is harsh. Babies like Rowen go through months of intensive, multi-drug chemotherapy, delicate brain surgery, and sometimes high-dose chemotherapy with stem-cell rescue or radiation. It is incredibly hard on a small, still-growing body, and it often means long hospital stays, infections, transfusions and side effects that can last.
Much of it is also old. Most of the chemotherapy drugs in Rowen’s plan — vincristine, methotrexate, cyclophosphamide, cisplatin, etoposide, carboplatin and thiotepa — were first developed between the 1950s and the 1980s. New cancer drugs are usually made for adults first, and because childhood cancers are rare, very few have been developed specifically for children. That is why research matters so much: kids deserve treatments that are gentler, more targeted, and made with them in mind.
Rowen is being treated at one of the country's leading pediatric cancer centers.
For 2026–2027, Seattle Children's is ranked among the top 10 children's hospitals in the United States and #5 nationally for pediatric cancer by U.S. News & World Report. Its Brain Tumor Program is one of the largest in the world, and Seattle Children's reports that survival among the children it treats for brain tumors is consistently among the best in the country.
Seattle Children's doctors have also led research that has improved treatment and survival for children with embryonal brain tumors, including approaches designed specifically for very young children.
Our care team told us they treat around 30 children each year with similar types of pediatric brain tumors. For something as rare as ATRT, having a team that regularly treats aggressive childhood brain tumors gives us a lot of reassurance that Rowen is exactly where he needs to be.
Cancer in children is rare compared with cancer in adults — but for the families affected by it, rare doesn't feel rare.
In the U.S., thousands of children are diagnosed with cancer every year, and cancer remains the leading cause of death from disease among children beyond infancy. While survival has improved dramatically for many childhood cancers, those improvements have not been equal across every diagnosis. Some rare and aggressive pediatric cancers still have very limited treatment options.
Childhood cancers are not simply smaller versions of adult cancers. They often develop differently, involve different genetic changes, and require treatments designed around a child's growing brain and body.
Every childhood cancer is considered rare, and some individual diagnoses are extraordinarily rare. That means researchers have fewer patients available for clinical trials, less tumor data to study, and fewer opportunities to test new treatments. For some very rare childhood cancers, there is still limited information about why they develop, how they behave, and which treatments work best.
More research means more than finding cures. It means developing treatments that are more effective, less toxic, and less likely to leave children with lifelong effects from chemotherapy, radiation, or surgery.
The National Cancer Institute invests billions of dollars each year across all types of cancer research. Dedicated pediatric efforts do exist, including the Childhood Cancer Data Initiative, which receives about $50 million per year, and funding through the Childhood Cancer STAR Act. These programs are helping researchers share data, study rare cancers, improve treatment, and understand the long-term needs of childhood cancer survivors.
But rare childhood cancers remain incredibly difficult to study. More funding, more shared data, more clinical trials, and more researchers focused specifically on pediatric cancers can mean more options for the next child diagnosed.
There is no routine screening test for most childhood cancers or childhood brain tumors. Often, cancer is discovered because a parent notices that something about their child is different.
Most of these symptoms will not mean cancer. Children get sick, throw up, stumble, become tired, and lose their appetite for countless ordinary reasons.
What matters is noticing when something is persistent, unexplained, progressively getting worse, or simply isn't normal for your child.
Possible warning signs can include:
Young children can't always tell us that something feels wrong. Signs of a brain tumor can sometimes be especially subtle.
They may include unusual eye movements, trouble swallowing, developmental changes, weakness, decreased use of an arm or leg, problems with coordination, loss of appetite, irritability, unusual sleepiness, vomiting, or changes in head growth.
For Rowen, there wasn't one dramatic symptom that immediately said brain tumor.
There were small things over time — his head tilt, abnormal eye movements, changes in appetite and energy, vomiting, and eventually decreased use of his left arm.
Individually, many of those symptoms could have had completely ordinary explanations. Together, and as they progressed, they told us something wasn't right.
Childhood cancer is rare. Parents should not live afraid that every fever, fall, or stomach bug is cancer.
Awareness is not about creating fear.
It's about recognizing when symptoms aren't going away, when they're getting worse, when several unusual symptoms appear together, or when your child simply isn't acting like themselves.
You know your child's normal.
If something continues to feel wrong, keep asking questions.
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