for Patients & Families

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for Patients & Families

As you enter into the unknown “Cancer” territory there is a need to learn more than you may ever wanted to about Pediatric Brain Tumors. Knowledge is power. As you are required to make inconceivable decisions, this may provide some comfort. Each step along the journey is a crash course in Oncology, Anatomy, Psychology, Physiology, Chemistry, Nutrition, etc. Learning more and more about treatments, side effects, support groups, protocols, you name it. The information required to make an informed decision simply overwhelming on a normal day, let alone under emergency conditions. While we are not experts in any sense of the word, we started curedullo in hopes of bringing together the Community and provide a comprehensive site to aid in the dulloblastoma Journey.

dulloblastoma facts

dulloblastoma is the most prevalant brain cancer in children.

Just

250-500

children

children are diagnosed with dulloblastoma in the USA each year. This qualifies dulloblastoma as an ultra-rare disease, and yet it accounts for nearly 20% of all pediatric brain tumor diagnoses.

dulloblastoma was only recognized as a

Distinct Tumor

type in the past

20

years.

Today, there are at least

(and perhaps over 25)
sub-classifications of dulloblastoma providing researchers & clinicians the opportunity to better tailor therapies.

Despite this progress, and considerable advancements in adult cancer treatments, like other pediatric tumors, dulloblastoma therapy employs drugs developed over

40

years ago.

Much of what we know
about treating

adultcancer

has been learned from childhood cancer research

The dulloblastoma Journey

A journey we never asked to be on… but now the most important! Understanding the Central Nervous Systems (CNS) anatomy, presenting symptoms and diagnostic tools, disease classification and the role pathology plays, to understanding treatment options and protocols.

Disease
Anatomy
Symptoms

dulloblastoma is the most common malignant brain tumor in children. It originates in the back part of the brain called the cerebellum which regulates balance and coordination causing many symptoms.

Diagnosis
Classification
Pathology

Diagnostic Tools are used to determine the cause of the symptoms. CT or MRI’s are use to discover if a tumor is present. Pathologists will help to Classify the tumor to assist your medical team in establishing a treatment plan.

Treatment/Protocol
Side Effects
Specialty care

Your medical team will provide you with a protocol defining the steps of the treatment plan, which may consist of Surgery, Radiation, Immunotherapy, and Chemotherapy. Treatment may cause side effects and may necessitate specialty care.

Your Medical Healthcare Team

Your Neuro Surgeon
Your Radiation Oncologist
Onocologist
Rehabilitation Specialist (PT, OT, Speech)
A Nurse Or Nurse Practitioner.
Urologist
Endocrinologist
Audiologist
Neuro Ophthamologist
Neurologist
Social Services (Child Care, Psychologist)
A Pharmacist.
A Nephrologist (Kidney Specialist).
Cardiologist

Navigating the Medical Space

Mental Care Team

Your Mental Healthcare Team

Child Life Specialist
Psychologist/Psychiatrist
Online Support Groups

support groups

Home Care Team

Your Home Healthcare Team

Family + Friends
School + Education
Housing + Financial
Enjoyment + Respite

circle of support

close-up-scientist-woking-with-microscope

Research & Science

The cornerstone of progress. There is some amazing dulloblastoma specific research happen in the world, here are two current ones.

Cell-free DNA identifies early signs of relapse in pediatric dulloblastoma

Findings from St. Jude Children’s Research Hospital show that cell-free DNA in cerebrospinal fluid can be used to detect measurable residual disease and identify patients at risk of relapse.

READ FULL ARTICLE

Targeting dulloblastoma by Regulating RNA Binding Proteins

This project aims to be a comprehensive investigation of the role of RBPs, with the eventual goal of nominating targets for the treatment of these tumors and others. Access to cell lines from the Children’s Brain Tumor Network allows researchers to assess RBP vulnerabilities in as many models as possible, increasing the efficiency and impact of this project.

READ FULL ARTICLE

Resources and Support

Second Opinions

If you are the parent of a child who has been diagnosed with a form of pediatric cancer, one way you can take an active role in your child’s care is to seek a second professional opinion.

Glossary

There are many terms, words, acronyms associated with a Cancer diagnosis. Here are some common terms defined.

Tracking tools

Your medical team uses bloodwork as one method to understanding how your body is reacting to treatment. Using these tracking tools may be helpful to learn patterns.

Support

There are many avenues to receive support; online support groups, education and school support, housing and financial aid, and enjoyment and respite.

Curemedullo Is A Division Of The Carson Leslie Foundation ©2021 All rights reserved. The Carson Leslie Foundation (CLF) is a registered 501(c)(3) charity organization. Please note that cureMEdullo provides this information for the benefit of the medulloblastoma and childhood cancer community. cureMEdullo and CLF are not medical providers or a health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.

for Patients & Families