For Newly Diagnosed Families
A Guide from Families Who Understand
Your child’s diagnosis of a brain tumor is one of the most devastating things you will hear in your life. The sudden shift literally knocks the wind out of you. In an instant, life transitions from worrying about work, school and what’s for dinner to an entirely new reality.
Your family has likely faced many challenges already, and many more lie ahead. Let’s take it one day at a time. Make the most of each moment with your child and family, and know organizations like Team Jack are here to help you take advantage of all the best resources for your child.
It’s okay if your energy is at an all time low right now. We’ve been there, this is all so draining. But please know, the steps you take right after learning your child’s diagnosis are critical.
To help you learn about your child’s disease and what your treatment options are, we have some resources below.
We have your back through this and want to help you learn as much as you can to support your child. Please reach out if you have any questions and we’ll point you in the right direction.
Childhood brain cancer is a very rare disease. Only 13,500 children under age 15 are diagnosed with cancer each year. Of this amount, about 2,700 of those children have brain tumors.
Because brain tumors are so rare, it’s possible that your family doctor or pediatrician has never treated anyone with a brain tumor before. They are an excellent home base for your child’s care, but listen to their recommendations and do your own research for brain tumor specialists.
There are many different kinds of brain tumors, and a common way to classify them is by how fast they grow. According to the National Cancer Institute (NCI) at the National Institutes of Health, brain tumors are classified in grades:
- Grade I: The cells look nearly like normal brain cells and they grow slowly.
- Grade II: The tissue is malignant. The cells look less normal than in a Grade I tumor.
- Grade III: The malignant tissue has cells that look very different abnormal.
- Grade IV: The malignant tissue has cells that look most abnormal and grow quickly.
Grade I tumors are considered low grade, while Grade II tumors are considered intermediate grade, and Grade III and IV high grade. You can learn more at the NCI website.
Generally, your doctors will follow the order of this list to create the best treatment strategy and treat your child. Your doctors will explain their reasoning and strategy as you go.
1. Magnetic Resonance Imagining (MRI)
An MRI scan allows doctors to determine the location and size of a tumor. This information will help them decide whether to perform surgery or a different kind of treatment.
2. Psychological Evaluation
Before any treatment can start, your child must undergo an in-depth psychological evaluation to set a baseline of their brain function. Pre-treatment testing will be compared to post-treatment testing to measure your child’s progress and help doctors determine next steps.
We recommend you insist on consistent evaluations throughout your child’s treatment. They are essential to your child’s ongoing well-being and future health.
The main goal of surgery is to remove as much of a brain tumor as possible.
A lot of factors will affect how much of your child’s tumor can be removed surgically. But above all, it is critical that an experienced pediatric neurosurgeon who specializes in brain tumor removal performs your child’s surgery.
4. Pathological Study & Diagnosis
After surgery, tumor specimens will be sent to a laboratory to be studied by a neuropathologist—a doctor who specializes in brain tissue analysis and brain diseases.
The neuropathologist will determine what kind of tumor your child has and the grade of the tumor. You should then insist a neuropathologist study more aspects of the tumor to search for genetic mutations and abnormalities. If your hospital cannot run genetic tests on tumors, find a second opinion. Genetic tests are key to developing an effective treatment plan.
Depending on genetic mutations, the type and grade of the tumor, the outcome of surgery and many other factors, your child may or may not need chemotherapy. The neuropathologist’s studies will help your child’s oncologist decide whether chemotherapy or a different treatment is needed.
Again, depending on genetic mutations, the type and grade of the tumor, the outcome of surgery and many other factors, your child may or may not need radiation therapy. Radiation therapy does present some concerns in pediatric medicine, as a child’s brain is still developing and radiation can harm that development.
Sometimes, however, radiation is necessary for the survival of the child. Doctors are developing new, safer kinds of radiation to protect healthy brain tissue like proton beam therapy. But the risks of radiation are still present. Radiation has been linked to long-term adverse effects, but may be the best course of action for your child.
Your Child’s Treatment Team
To help your child fight their brain tumor, you need to assemble a dream team of doctors and specialists. The best care comes from not just experienced doctors, but doctors who work as a team.
An excellent place to start searching for experts is the Pediatric Brain Tumor Consortium (PBTC). This world-renowned association can connect you with the best brain tumor treatment institutions in the country.
And remember: Many brain cancer treatment decisions are based on subjective observations. We urge you to get second or third opinions from different doctors before you choose a treatment course for your child.
Important Note: The most valuable part of your child’s treatment team is an incredibly experienced neurosurgeon. Surgery is a turning point that sets the course for the rest of your child’s treatment. Please search the PBTC to find neurosurgeons that can effectively treat your child.
Your team should include each of the following:
Pediatric Onco-Neurologist (Childhood brain cancer specialist)
Pediatric Onco-Neurosurgeon (Childhood brain cancer surgeon)
Pediatric Neuropathologist (Diagnoses childhood brain diseases and studies brain tissue)
Pediatric Neuroradiologist (Brain imaging expert)
Pediatric Neuropsychologist (Brain function expert)
And if necessary:
Pediatric endocrinologist (Hormone and gland expert)
Pediatric ophthalmologist (Eye and vision expert)
Note: This material is not medical advice. The information contained herein is not intended to be relied upon as an official advisory opinion of any kind. This information has been provided as supplemental support for a family undergoing a new pediatric brain tumor diagnosis. If you are a parent and would like to visit with other parents that have been impacted by the disease, please do not hesitate to reach out to Team Jack. Please email us at firstname.lastname@example.org.