Regina Karchner, MSW, LICSW, Clinical Social Worker and Patient Advocate at Children’s Brain Tumor Foundation shares her perspective on what living with pLGG can look like, and why having support, resources, and the right care team matters so much for optimal care and long-term outcomes for children and their families.

Q: When a child is newly diagnosed with a brain tumor, what are the needs you see that often go unspoken or unaddressed?

A: “It is incredibly scary for families to hear that their child has cancer, and brain cancer often feels extra scary because it involves the brain. While the stress and shock of the diagnosis are acknowledged medically, families do not always receive enough emotional or practical support alongside that information.

One of the most common needs I see is families simply wanting someone to sit with them, answer questions, and not rush them. Children’s Brain Tumor Foundation (CBTF) social workers can meet with families for however long the family needs to feel supported. This is something unique CBTF offers.  Another major need is connection with other families who have been through something similar. Parents often turn to websites and social media searching for support, and while there are some advantages to these connections, it also can put families at risk of misinformation or upsetting stories when they are already overwhelmed and isolated.

I also see support systems naturally fade over time. At diagnosis, there is often a lot of attention and help from friends and extended family, but as treatment continues for months or years, families can feel increasingly alone. Practical concerns also become major stressors. Things like navigating time off from work, understanding employee rights, managing childcare for siblings, and trying to identify one reliable point of contact within the healthcare system who they can consistently turn to for guidance.”

Q: How does a brain tumor diagnosis uniquely affect a child’s daily life in ways that may not be fully captured in medical conversations?

A: “A brain tumor diagnosis affects nearly every aspect of a child’s daily life, often in ways that are not immediately visible. Missing school and extracurricular activities is a major disruption, but what is especially challenging for many brain tumor survivors is the long-term mental fatigue and slower processing speed that can continue well after treatment.

Even when children are physically present at school or social events, they may struggle to keep up with conversations or fully engage with peers because they are mentally exhausted. Sometimes by the time they organize their thoughts, the conversation has already moved on. Peers may misunderstand this and interpret it as disinterest, which can lead to social isolation.

School itself often becomes much harder due to both missed instruction and neurocognitive changes. Many schools have limited experience supporting students with brain tumors and may not fully understand the invisible disabilities these children experience, including difficulties with attention, memory, processing speed, and social interaction.

I also see significant identity challenges. A child who had identified strongly as an athlete, gifted student, musician, or highly social child may struggle emotionally if treatment changes their physical abilities, academic performance, speech, or independence. Siblings are affected too. As one sibling told me, ‘After my brother’s surgery a few years ago, his thinking changed. I had to grieve the loss of the brother I grew up with and had to learn to love a new person.’”

Q: What are the biggest emotional or practical burdens families carry over the course of treatment and survivorship that the healthcare system could better support?

A: “One of the biggest gaps I see is the lack of adequate psychosocial support for families throughout treatment and survivorship.  Families are carrying enormous emotional burdens, and many patients, caregivers, and siblings experience anxiety, depression, and symptoms of trauma or PTSD. At the same time, many families report they feel pressure to appear strong and composed at the hospital, so providers may assume they are coping better than they actually are.

I strongly believe more social workers, psychologists, and psychosocial staff are needed within pediatric neuro-oncology care. Since COVID in particular, burnout and turnover among psychosocial providers has made it even harder for families to access support consistently.

Financial strain is another major burden. No family can truly afford a brain tumor diagnosis, even families who appear financially stable on paper. Travel costs, missed work, rehabilitation services, therapies, and long-term interventions add up quickly, and many families are hesitant or embarrassed to ask for help if they do not meet traditional definitions of financial hardship.

What is especially important to understand is that the financial and caregiving responsibilities often continue long after treatment ends. Many survivors require ongoing therapies, educational support, or assistance with daily living that are not covered by insurance. Some cannot work full-time due to physical limitations or mental fatigue, and many remain dependent on their families well into adulthood. Parents often carry significant anxiety about what will happen to their child in the future and who will care for them later in life.”

Q: Why should quality of life be a primary consideration in the ongoing care of children living with pLGG, alongside tumor response and survival?

A: “For many families, survival is only part of the picture. What they care about most is reducing the long-term neurocognitive and physical disabilities that can follow a brain tumor diagnosis and treatment. Families want their child to be able to learn, socialize, communicate, maintain independence, and participate in everyday life as fully as possible.

Quality of life during treatment also matters tremendously. Families think constantly about how frequent appointments, hospitalizations, travel, and treatment side effects will affect the entire family system. For children specifically, school is often incredibly important. Most children want to go to school as much as possible because it represents normalcy, friendships, routine, and identity during a time when so much else feels uncertain.”

Q: If researchers and industry partners could better understand one aspect of the lived experience of pediatric brain tumor families, what would you want them to hear?

A: “I would want researchers and industry partners to better understand that the effects of a pediatric brain tumor diagnosis often last a lifetime. The medical system understandably focuses heavily on survival during treatment, but families continue living with the long-term neurocognitive, physical, emotional, and social impacts for years and decades afterward.

I also believe psychosocial care and neuropsychological support should be more consistently built into clinical trials and treatment protocols. Some studies already include these services, but expanding that support would help address needs families repeatedly identify as essential to quality of life and long-term survivorship.”

Learn more about the work of the Children’s Brain Tumor Foundation at www.cbtf.org. Their programs are dedicated to helping children, survivors, siblings, and caregivers navigate life with a pediatric brain tumor and find support beyond clinic visits. Day One Biopharmaceuticals partners with and provides financial support to the Children’s Brain Tumor Foundation from time to time.