Newly Diagnosed? Start Here.
A DIPG/DMG diagnosis changes everything in an instant.
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Suddenly, you're faced with unfamiliar medical terminology, difficult decisions, and questions you never imagined having to ask.
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We know how overwhelming those first days can feel because we've walked this road ourselves.
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This page was created to help families find clear information, understand their options, and take the next steps without feeling like they have to figure everything out at once.
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You don't have to navigate this journey alone. One step at a time, we're here to walk beside you.
Specialized Treatment
Centers
Finding experienced medical care can feel overwhelming after a DIPG/DMG diagnosis.
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We've gathered a small selection of pediatric treatment centers with experience in DIPG/DMG care and research to help families know where to begin.
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These hospitals are not ranked, and this is not a complete list. Every child's needs are different, and your child's medical team can help guide you toward appropriate specialists, second opinions, and treatment opportunities.
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You don't have to contact every hospital or make every decision today. One step at a time.
MD Anderson provides specialized pediatric brain tumor care, including radiation oncology, supportive care, and opportunities to explore clinical research.
A Personal Connection
MD Anderson Cancer Center and Texas Children's Hospital hold a special place in our hearts. Both were part of Kinlee's care during her fight against DIPG, and we are grateful for the medical professionals who walked alongside our family.
Seattle Children's has a pediatric brain tumor program with research focused on DIPG/DMG, including investigational immunotherapies and clinical trials.
Seattle, Washington
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Children's National offers specialized pediatric brain tumor care and participates in research focused on improving treatment options for children with DIPG/DMG.
Washington D.C.
A Gentle Reminder
You do not have to contact every hospital on this list. Your child's medical team can help you determine which specialists, second opinions, or research opportunities may be appropriate.
Some consultations may begin with a review of medical records and imaging, without requiring immediate travel.
This directory is intended as a starting point, not a complete list of treatment centers or an endorsement of any particular hospital.
One step at a time. You are not alone.
Houston, Texas
Houston, Texas
Texas Children's offers pediatric neuro-oncology care, multidisciplinary treatment planning, and research focused on childhood brain tumors, including DIPG/DMG.
Dana-Farber/Boston Children's provides specialized pediatric neuro-oncology care, second opinions, and research opportunities for children diagnosed with DIPG/DMG.
Boston, Massachussets
Stanford Children's provides pediatric neuro-oncology services and participates in research exploring new approaches to childhood brain tumors, including DIPG/DMG.
Palo Alto, California
Understanding Treatment Options
Receiving a DIPG/DMG diagnosis can leave families facing difficult decisions in an incredibly short amount of time.
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While there is currently no established cure for DIPG, treatments and supportive care may help manage symptoms, preserve quality of life, and, in some cases, temporarily slow tumor growth.
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Understanding the purpose of each option, its potential benefits, and its limitations can help families have more informed conversations with their child's medical team.
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You deserve clear information, compassionate guidance, and the opportunity to ask every question on your heart.
Radiation Therapy
For many children diagnosed with DIPG, radiation therapy is the first treatment recommended.
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Radiation uses carefully targeted high-energy beams to damage tumor cells and may temporarily slow tumor growth, reduce symptoms, and improve neurological function.
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Radiation is not a cure for DIPG. Its primary goal is to provide temporary tumor control and help preserve a child's quality of life.
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Many children receive approximately 30 treatments over six weeks, although treatment schedules can vary based on individual circumstances and recommendations from their medical team.
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Some children experience improvement during or after radiation, while others may have a more limited response. Unfortunately, tumor progression commonly occurs despite treatment.
Medications & Symptom
Management
Medications play an important role in helping manage the symptoms of DIPG/DMG and improving a child's comfort and quality of life.
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Depending on a child's symptoms, their medical team may recommend corticosteroids to reduce swelling, medications to manage pain or nausea, and treatments to address muscle stiffness, sleep difficulties, or other neurological symptoms.
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Some children may also need additional support for swallowing, breathing, or changes in mobility as the disease progresses.
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These medications do not cure DIPG, but they can make a meaningful difference in a child's day-to-day comfort and well-being.
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Every child's needs are different. Medication choices and adjustments should always be guided by their medical team.
Supportive & Palliative Care
Palliative care focuses on improving a child's comfort, quality of life, and overall well-being while supporting the entire family throughout their medical journey.
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One of the most important things for families to understand is that palliative care is not the same as hospice care. It can begin at diagnosis and be provided alongside radiation therapy, clinical trials, and other treatments.
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Supportive and palliative care teams may help manage pain, nausea, fatigue, anxiety, difficulty swallowing, changes in mobility, and other symptoms associated with DIPG/DMG.
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These teams can also provide emotional support, guidance with difficult decisions, and resources for parents, siblings, and caregivers.
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Choosing palliative care does not mean choosing to stop fighting. It means making sure your child receives compassionate, comprehensive care every step of the way.
Clinical Trials & Emerging
Treatments
Clinical trials play an important role in advancing research and exploring new treatment possibilities for children diagnosed with DIPG/DMG.
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Because there is currently no established cure for DIPG, researchers are investigating approaches such as targeted therapies, immunotherapies, CAR T-cell therapies, and new methods of delivering medications directly to the tumor.
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Some clinical trials are designed to evaluate safety and determine appropriate dosing, while others study how well a treatment works. Participation does not guarantee improvement, and experimental treatments may carry significant risks.
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Eligibility requirements vary and may depend on factors such as a child's age, tumor characteristics, previous treatments, and overall health.
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Families considering clinical trials should speak with a pediatric neuro-oncology specialist as early as possible. Some studies have specific enrollment windows or restrictions related to prior treatments, including radiation.
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Every child deserves access to accurate information, thoughtful guidance, and the opportunity to explore appropriate options.
Getting a Second Opinion
After a DIPG/DMG diagnosis, seeking a second opinion can help families better understand their child's diagnosis, treatment options, and potential research opportunities.
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A second opinion does not mean you distrust your child's medical team. It simply allows another specialist, ideally one experienced in pediatric brain tumors, to review the information and offer additional guidance.
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Some hospitals can begin this process by reviewing MRI images and medical records remotely, although requirements vary by institution.
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Because certain treatments and clinical trials have specific timing requirements, families should discuss second opinions with their child's medical team as early as possible.
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You have the right to ask questions, seek additional expertise, and feel informed about the decisions being made for your child.
What Records
Will I Need?
When requesting a second opinion for DIPG/DMG, having your child's medical records organized can help specialists review the diagnosis and provide recommendations more efficiently.
Important records to request include:
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MRI Images: Request the actual MRI images in DICOM format, not just the written radiology report. Ask how the images can be securely transferred to another hospital.
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Radiology Reports: Written interpretations of your child's MRI and other relevant imaging studies.
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Pathology & Molecular Testing: Biopsy reports and genetic or molecular testing results, if a biopsy was performed.
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Treatment Records: Radiation plans and summaries, medication lists, and information about any treatments already received.
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Medical History: Recent clinical notes, hospitalization summaries, and a timeline of symptoms and important medical events.
Not every child will have undergone a biopsy, and families should not delay requesting a second opinion simply because certain records are unavailable.
Helpful Tip: Ask your child's hospital for access to the patient portal and medical records department. Keep copies of important documents in one organized folder so they are easier to share when needed.
How Do I Request a Second Opinion?
Seeking a second opinion can feel intimidating, especially when treatment decisions are time-sensitive. You do not have to navigate the process alone.
 Step 1: Identify a Specialist
Look for a pediatric neuro-oncology team experienced in treating DIPG/DMG. Our Specialized Treatment Centers directory provides several hospitals where families can begin.
 Step 2: Contact the Hospital
Ask for the pediatric neuro-oncology department or second-opinion program. Explain your child's diagnosis and ask about the consultation process, appointment availability, and whether an initial records review can be completed remotely.
 Step 3: Request a Referral
Your child's current medical team can often help coordinate referrals, transfer medical records, and communicate directly with another hospital. Ask whether a referral is required.
 Step 4: Submit Medical Records
Follow the receiving hospital's instructions for securely submitting MRI images, radiology reports, pathology results, and treatment summaries.
 Step 5: Prepare for the Consultation
Write down your questions, current concerns, and any recommendations you would like clarified. Ask about consultation costs, insuranceÂ
coverage, and available financial assistance.
Important Reminder: A second opinion does not necessarily require changing hospitals or transferring your child's care. Many families continue treatment with their original medical team while consulting additional specialists.
Because some clinical trials have specific enrollment requirements, discuss the timing of second opinions with your child's medical team before beginning treatment whenever possible.
Questions To Ask
the Specialists
When meeting with a pediatric neuro-oncology specialist, having questions prepared can help families better understand their child's diagnosis and available options.
Understanding the Diagnosis
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Do you agree with the original diagnosis based on my child's MRI and medical records?
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Would a biopsy or additional molecular testing provide information that could influence treatment or clinical trial eligibility?
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Are there specific tumor characteristics or mutations we should understand?
Exploring Treatment Options
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What treatment approach would you recommend, and why?
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What are the potential benefits, risks, and limitations?
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Are there alternatives we should consider?
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How might treatment affect my child's symptoms and quality of life?
Clinical Trials & Research
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Are there clinical trials my child may qualify for?
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Would beginning radiation or another treatment affect eligibility for those trials?
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Are there specific enrollment deadlines or requirements we should know about?
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Could molecular testing help identify relevant research opportunities?
Planning the Next Steps
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How quickly do we need to make treatment decisions?
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Can your team collaborate with our current hospital?
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What symptoms or changes should prompt immediate medical attention?
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Who should we contact if additional questions arise?
Remember: You are allowed to ask questions, request clarification, and take notes. When medically appropriate, ask for time to consider the information before making decisions.
You are an important member of your child's care team, and your voice matters.