An active and bubbly three-year-old is no longer doing the fun things she always loved to do. Her speech starts regressing, and she uses baby talk. She is falling and unsteady on her feet and can no longer control her urine as she once did. These were the signs of just one family who, within a week, had their daughter diagnosed with DIPG, a fatal form of brain cancer. The symptoms appeared suddenly, and within fifteen months, this once vibrant little three-year-old is now forever four, succumbing to brain cancer.

The horror and fear that strikes the heart of parents are incomprehensible when they hear the words brain cancer. Yet, according to the American Cancer Society, brain and spinal cord tumors are the second most common form of cancer among children. It shows up very suddenly, and life turns upside down as parents are thrust into this new, unthinkable journey to save their child’s precious life. Their thoughts, fears, daily activities bring them to their knees. They live in a panicked daze trying to maintain composure.

Pediatric Brain Cancer Statistics and Symptoms

Each year, one in four childhood cancers, or 4,000 children and teens, are diagnosed with brain and spinal cord tumors. Brain tumors in children are more likely to start in the lower parts of the brain, such as the cerebellum and brain stem than they are in adults. Signs and symptoms of a brain tumor in children vary greatly and depend on the brain tumor type, size, location, and growth rate. Some signs and symptoms may not be easy to detect because they’re similar to symptoms of other conditions.

Some of the more common symptoms of a brain tumor in children include:

• Headaches, which may become more frequent and more severe
• Feeling of increased pressure in the head
• Unexplained nausea or vomiting
• Abrupt onset of vision problems, such double vision

Other possible signs and symptoms, depending on the tumor location, include:

• A fuller soft spot (fontanel) on the skull in babies
• Seizures, especially when there’s no history of seizures
• Abnormal eye movement
• Slurred speech
• Trouble swallowing
• Loss of appetite; or in babies, difficulty feeding
• Difficulty with balance
• Trouble walking
• Weakness or loss of sensation in an arm or a leg
• Weakness or drooping on one side on the face
• Confusion, irritability
• Memory problems
• Personality or behavior changes
• Hearing problems

A Study of Parents Stress Levels After Diagnosis

A group of researchers at the University of Alabama conducted a study published in the Journal of Neurosurgery (JNS) evaluating distress levels and psychosocial risk for parents of childhood brain and spinal cord tumors. https://thejns.org/pediatrics/view/journals/j-neurosurg-pediatr/23/1/article-p40.xml The researchers hoped to point to how psychosocial care delivery could be enhanced to help families better cope with this devastating disease and improve treatment outcomes.

According to the study findings published by JNS, “the diagnosis of a brain tumor in a child is a stressful event for the entire family. The initial hospitalization for surgical treatment carries many potential distress factors for both the patient and family members. Specifically, prior studies have indicated a link between parental stress/distress and anxiety about their child’s illness and its impact on child adjustment and coping, potentially leading to maladaptive responses that can affect the entire course of treatment.

“Distress is broadly viewed as an emotional response including sadness, worry, and fear. Therefore, a strategy to measure and mitigate family distress has potential benefits to the family not only during the initial hospitalization but also throughout the brain tumor treatment trajectory.” Given the absence of literature documenting family distress in the pediatric brain cancer population, the primary focus of the study was to understand and delineate family distress, its level, and what impacts stress/distress.

Summary of What the Study Found

The investigators administered surveys to parents whose children were hospitalized with a brain tumor. Families of children with newly diagnosed brain tumors experience high levels of distress and psychosocial risk. This is no surprise. However, some findings were interesting to note. The study showed that social work was a lower need (below mean) according to PAT (Psychosocial Assessment Tool). Most interesting is when families access social workers, it actually increases the DT (Distress Thermometer) significantly more so than those who did not enlist the help of a social worker!

It also indicated that families who sought in-hospital counseling and Child Life support had lower distress scores than those who did not, which is good. Notably, however, even accessing the Child Life program did not bring the Distress Thermometer to the mean (average) level of stress for parents who had a child with brain cancer. That rings of a program that is needed but ineffective.

The study’s summary indicates: “We observed no ‘significant’ association between the hospital support services that a family receives and their DT or PAT scores. Concerning hospital services offered during the inpatient hospital stay, there were no ‘significant’ associations between PAT scores and services provided by counseling/psychology, pastoral care, social work, and rehabilitation medicine. We believe that this negative finding is an important observation. The lack of association between the Distress Thermometer (DT) and Psychosocial Assessment Tool (PAT) scores and support services may indicate that families in the greatest need of support are not receiving it. This represents a potential gap in care and an opportunity for improvement.”

Impact on Families

As the study shows, these services are needed but are not adequately provided in a hospital setting. As a result of severe changes in functionality and the often poor prognoses of cancerous brain tumors, children and their families are at very high risk for physical, emotional, and financial distress. The only factor reducing the distress thermometer (DT) in this study was whether the tumor was benign or malignant. Higher stress and anxiety levels (DT) were seen with parent(s) with financial concerns but not within different races or ethnicities. Cancer is no respecter of persons! Sadly, according to some studies, parents under this level of distress can hinder their child’s treatment and recovery when their child mirrors a parent’s stress and fear.

Hospitals Treat Cancer, Not the Needs of Families

Do hospitals need to stay in their lane and deal only with treatment of the disease? Are they failing to physically, financially, and emotionally support families whose children they treat? Would patient families be better served if hospitals partnered with outside organizations that provide family support during the cancer journey? Very likely! However, as long as cancer research and cancer treatment (hospitals) own the conversation and funding with media and the general public with their behemoth budgets for marketing and fundraising, this may never happen.

We need to think of cancer as a three-legged stool…research, treatment AND journey! Awareness and funding need to focus on the journey as much as on research and treatment. So why is there little focus and funding for families’ physical, financial, and emotional needs? Support of the cancer journey is fragmented with many smaller, lesser-funded nonprofits providing counseling, legal services, camps for kids, grants/funds for clinical trials and drugs, help with co-pays and living expenses, wish organizations, and many more. It’s clear, cancer research and hospitals own the conversation and funding because of their size and behemoth fundraising clout.

Get Help During the Cancer Journey

Coping with childhood brain cancer alone is debilitating. The stress can be unbearable when families have financial difficulties or do not know where to turn for help with life and caregiving at home. Organizing life with other children, pets, family members, or friends who want to help can be utterly overwhelming and often stop families from obtaining the support they desperately need. Now there is an organization focused on the journey that does all those things and more, Here to Serve.

What is required for families with a child who has brain cancer? Someone to help them find the resources available for the physical, financial, and psychological support they desperately need. Here to Serve was created to help these families by providing wraparound support during the journey. At Here to Serve, the founder, Katie Quintas knows firsthand what it is like to be a parent of a child with cancer. She understands the needs of families and has created an organization that provides wraparound support. 

Often the first step is recognizing the level of distress a family is experiencing. A family may not want to admit they need help or know where to turn for help. If you know of a family with a child newly diagnosed with cancer, please let them know the support available at Here to Serve. This organization is always looking for volunteers to add to its team. If you or someone you know would like to volunteer their time or resources, use the highlighted links to get in touch.

By Amanda Enciso and Katie Quintas

About the Authors