March 2019 - DIPG | The Marc Jr Foundation

Posted on March 28, 2019 March 28, 2019

Knowing More About The Diagnosis Of DIPG

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In Marc Jr Foundation’s DIPG awareness series, we have written about what is DIPG and its symptoms. In this article, we are going to understand more about the diagnosis of DIPG. We know that DIPG is a rare glial tumor, a cure for which hasn’t been found yet. As this tumor occurs in the pons of the brain stem, usually a biopsy is not possible.

A patient’s symptoms clinical history along with a Magnetic Image Resonance (MRI) scan can help diagnose DIPG. Through MRI detailed brain scans are created which allows medical professionals to check whether a tumor is present in the pontine segment of the brain.

A Magnetic Resonance Imaging (MRI) Machine

The margins of a DIPG tumor are not well-defined like other tumors. Sometimes a contrast agent is used before an MRI scan but it may not enhance a DIPG tumor. Once the presence of the tumor is ascertained, its position in the pons, its size, the way it presses on the brain tissue etc. are some of the things that help the doctors diagnose DIPG.

In rare cases, when the results of the MRI scan and the symptoms of the child are atypical, surgical biopsy may be performed. This procedure is considered to be very risky by medical professionals. According to The Childhood Brain Tumor Foundation, France used biopsies to diagnose DIPG.

Location of DIPG tumor in the brain | Source: medicpassion.com

Like DIPG, the diagnosis of the tumor is a taxing procedure that can take a toll on the family and the child. We request you to join our movement to raise awareness about DIPG and to generate funding for research to find a cure. It is a shocking reality that only 4% of the United States’ federal funding is dedicated for childhood cancer research, according to St. Baldrick’s Foundation.

You can volunteer, donate, or sponsor our events. Thank you, in advance.

Sources:

https://www.childhoodbraintumor.org/medical-information/diagnostics-and-epidemiology/item/272-dipg-2014

http://weillcornellbrainandspine.org/condition/diffuse-intrinsic-pontine-glioma-dipg/diagnosing-and-treating-dipg

Posted on March 22, 2019 March 26, 2019

The Symptoms of DIPG You Should Be Aware Of

Awareness about the not-much-talked-about Diffuse Intrinsic Pontine Glioma (DIPG) can help in the diagnosis and pain-relieving treatment of the disease. These glial tumors, that are found at the base of the brain are most common in children. A related condition called “hydrocephalus” wherein fluid builds-up in the brain also causes pressure in the brain.

These are the major symptoms of DIPG:

Problems with eye movement, vision, and control:

DIPG occurs in the “pons” of the brainstem, causing pressure on the cranial nerves that originate from that part of our brain. These nerves control the facial muscles that are used to move the eyes. Other symptoms of DIPG related to the eyes are double vision, drooping of the eyelids and inability to completely shut the eyes.

Difficulty in swallowing and chewing:

The cranial nerves that originate from the pons, also control the facial muscles which are used to chew and swallow food. Difficulty in performing these two functions are one of the first red flags.

Problems in balance:

The balance system of the human body works when the inner ear, brain, muscles, joints and the eyes function unimpaired together. DIPG hampers their functioning.

Headaches:

It causes headaches, especially in the morning. As the tumor enlarges, it causes pressure and pain in the brain.

Nausea and vomiting:

Both these symptoms are a result of the increased pressure inside the brain.

Other symptoms like fatigue, anxiety, deafness, difficulty in urinating, problems in walking, weakness in the limbs, clumsiness, difficulty in sleeping are also present. Symptoms can get intense a month before diagnosis but can also appear up to six months before. As DIPG is a rapidly-growing tumor the symptoms can get worse quickly. It is advisable to seek medical help as soon as possible.

The Marc Junior Foundation has been dedicated to spreading awareness about DIPG, funding research for its cure and encouraging the participation of the people in helping those facing DIPG. Join our movement. You can also donate to the cause.

Sources:

Posted on March 6, 2019 March 22, 2019

5 Things About DIPG That Will Help Us Understand It

Marc Jr Foundation, Marc Junior Foundation

Famous philosopher Voltaire said, “God gave us the gift of life; it is up to us to give ourselves the gift of living well.” It is difficult to have a positive outlook when your child is facing a rare tumor-like DIPG (Diffuse Intrinsic Pontine Glioma) but it is necessary. It is the quality of life that matters the most, no matter how long it is. When facing DIPG, one of the greatest challenges we face is the lack of knowledge about it. These seven things will help us understand it better.

1. DIPG affects children majorly, it is uncommon in adults.

About 300-350 cases of DIPG are diagnosed every year in the United States, out of which most are in children aged below ten. Both boys and girls are equally affected. (source)

2. The disease occurs in a delicate area of the brainstem that controls critical body functions.

DIPG occurs in the “pons” of the brainstem of a person. The pons is a structure located in the upper part of the brainstem that controls functions like breathing, senses like hearing and taste, body balance, communication between different sections of the brain etc.

3. The symptoms of DIPG can appear suddenly.

A pontine glioma, DIPG grows rapidly. Some of the early symptoms include sudden hearing problems, nausea, headache, vomiting, problems with movements of the eyes and eyelids, weakness in the face and the limbs, loss of balance, problems in chewing and swallowing food among others.

4. A cure has not been found for DIPG yet.

Treatments like radiotherapy help with the symptoms of DIPG by shrinking the tumor but they do not cure it. Despite ongoing research, no definite cure has been found. Research conducted by Dr. Mark Souweidane of St. Baldrick has come close to finding a cure through injecting a high concentration of cancer-fighting drug directly into the tumor. (reference)

5. Awareness, acceptance and comforting can go a long way in helping to deal with DIPG.

As the awareness of this rare tumor is scarce, it is difficult for families facing DIPG to understand and face the disease. Accepting that your child is facing DIPG will help you comfort them and make it a little easier. Simple comforting techniques like giving them their favorite soft toys, cuddling with them under a blanket like Quility, or watching a superhero movie with them will help.

Quility Premium Kids Weighted Blanket & Removable Cover

The Marc Junior Foundation has been helping families dealing with DIPG by offering educational and financial assistance, along with making efforts to fund research to find a cure. Get in touch with us for more information, donate today to make a difference.

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