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How Can You Help Children With Brain Tumors? (Pediatric Brain Tumor Fact Sheet)

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  • Beau, who is 8 years old, was diagnosed with ependymoma in March 2020. His treatment includes proton radiation, at a center 2.5 hours away from his home. 
    Beau, who is 8 years old, was diagnosed with ependymoma in March 2020. His treatment includes proton radiation, at a center 2.5 hours away from his home. 
  • May is Brain Tumor Awareness Month. You can help children with brain tumors by sharing the facts, raising awareness and supporting childhood cancer research
    May is Brain Tumor Awareness Month. You can help children with brain tumors by sharing the facts, raising awareness and supporting childhood cancer research

By: Trish Adkins

Brain tumors are the deadliest form of childhood cancer in the United States, accounting for 30% of all cancer deaths each year. Sometimes just centimeters in size, these tumors present real treatment challenges because of their critical location in the brain. 

Even though the five-year survival rate is 76%,  the reality is that even children who survive five years after diagnosis are not necessarily cancer-free, and they may not survive six years. 

It sounds bleak — but it is a call to action. At Alex’s Lemonade Stand Foundation, we know pediatric cancer firsthand, but we also know hope firsthand. More research that leads to safer treatments and cures is what children need to have a 100% chance of surviving long into their senior years.

So, how can you help children with brain tumors?

One way is to know the facts and share the facts. Another way is to support pediatric brain tumor research. By raising awareness and supporting research you can be part of the fight for cures. Here’s everything you need to know about pediatric brain tumors and how you can help:

1. Each week the equivalent of three classrooms of children are diagnosed with a brain tumor in the United States. 
That’s 13 children a day, 91 children a week and 4,760 children a year who face a brain tumor diagnosis.

2. Every day seven children die from childhood cancer and two of those children battled a brain tumor. 
The five-year survival rates vary greatly from 0% for high-grade gliomas like DIPG to more than 90% for low-grade tumors. Besides the tumor type, survival depends on the age of child at diagnosis, the location of the tumor and other factors. 

3. Over 60% of childhood brain tumors are found in the posterior fossa of the brain — the area that houses some of the most critical structures of the brain. 
The posterior fossa, found in the back of the brain, is home to the cerebellum, which controls balance and motor skills, and the brain stem, which controls the critical functions of the body such as blood pressure and breathing.

4. According to the World Health Organization (WHO), there are more than 100 types and subtypes of primary brain tumors, each of which carries their own distinct genetic profile.
Ten years ago, brain tumors were classified by two criteria: their appearance under the microscope and their location in the central nervous system. Now, tumors can be further defined based on their genetic features which can help to guide doctors toward precision treatments. 

The most common tumors include medulloblastoma, juvenile pilocytic astrocytoma (JPA), ependymoma, diffuse intrinsic pontine glioma (DIPG) and atypical teratoid rhabdoid tumor (AT/RT).

5. Brain tumor survivors are at risk for a bevy of long-term side effects that can affect every aspect of their life. 
Two-thirds of all children diagnosed with cancer are at risk for long-term side effects caused by both the tumor and the treatment. Side effects can include cardiac dysfunction, secondary cancers, memory loss, motor skill dysfunction, impaired balance, decreased muscle tone and hearing loss.

6. When the standards of care — surgery, radiation and chemotherapy — fail, children who are facing relapsed disease need options. 
Clinical trials represent the best hope for children with refractory or relapsed disease. Trials study the safety and effectiveness of new therapies that have shown success in the lab or with other diseases, with the goal of providing new standards of care.

7.  You can help be part of the solution by supporting research. 
Each of us can make a difference for children battling brain tumors by spreading awareness and working to fund groundbreaking research happening right now. Researchers like ALSF- funded researcher, Dr. Nada Jabado, are working to match genetic targets in tumors to drugs—with cures in mind. 

“What I can’t treat today, I will be able to treat, tomorrow,” said Dr. Jabado. 

For families going through pediatric brain tumor treatment, The Brain Tumor & Spinal Cord Tumor Guide can be an invaluable resource. The guide is on sale in Alex's Shop  from May 1-31 for 20% off. Use code: CCGF20.

During the COVID-19 pandemic, children with brain tumors are still in treatment. You can help families travel for treatment and support them through the ALSF COVID-19 Fund.  Find out more here. 

Sources: CDC, CBTRUS, WHO