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How To Make Your Child Feel Better While Facing DIPG?

DIPG, Children, Marc Jr Foundation

Facing DIPG is a challenge for not just the child who is diagnosed with it but also the entire family. For parents, seeing their child in pain can be much worse than being in pain themselves. Which is why comforting your child will help not just them but you as well. Here are five ways through which you can make your child feel better when you battle DIPG:

Do their favorite things, don’t mourn but celebrate their life:

It is difficult to accept that your child has a few months left to live. But it is extremely necessary that you accept this. It will help you plan for the coming moments beautifully. If these are going to be the last few months on their lives, you can make them memorable. Do their favorite things, make their life a celebration. It could be something as simple as building clay models or going on a long road trip. The distraction will also help them forget their pain.

DIPG, Children, Marc Jr Foundation
Comforting your child will help them face DIPG.

Be their strength and be an example:

DIPG majorly affects children under the age of ten. They are very young to understand what is happening to them. If you cry or be weak in front of them, they will imitate you. If you smile and be brave, they will do the same. A child will feel better when you accept the reality, be strong and make the moments of their lives filled with joy.

Cuddle and sleep beside them:

The symptoms of DIPG can make sleeping well difficult. Your child will feel better to see you beside them if they wake up in the middle of the night. Shower them with love. Tell them stories of brave people. Tell them tales of magic and fantasy so they can travel in their imagination. You can also buy them a cape and make them feel like they are superheroes on a mission against DIPG. This will help them a lot.

DIPG, Children, Marc Jr Foundation
You are your child’s strength.

Get in touch with an organization or a group of people:

One of the greatest pains of facing DIPG in the mind of a child is how they feel they are different than the other kids their age. Along with dealing with the physical challenges of DIPG, they feel left out mentally. Getting in touch with an organization like Marc Junior Foundation will help your child meet others who are also battling DIPG. They will feel like they are not alone. This will soothe them. You can also meet the family of the other children and share your feelings.

Be brave, Marc Jr Foundation is always with you. Your child is special, so are you.

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What Causes DIPG? Let’s Try To Get Some Answers

DIPG, DIPG Awareness, Treatment, Cure, Brain Tumor, Pediatric Cancer, Marc Jr Foundation

Diffuse Intrinsic Pontine Glioma (DIPG), is a type of a brain tumor that majorly affects children below the age of ten. This aggressive brain tumor that spreads quickly has no cure. Radiation treatment only temporarily helps alleviate the symptoms. Just like we don’t have answers on how to cure it, we don’t exactly know what causes DIPG. Finding the cause will advance our efforts in finding the cure.

Some cancers are caused due to environmental factors like exposure to radiation or smoking while others are caused because of inherited genes. In the case of DIPG, there is no evidence that supports these two causes.

According to studies, DIPG formation may be linked to the development of the brain. Certain cells in the brain are present in a higher concentration in the development stages. Research suggests that these cells are responsible for causing DIPG. As we mentioned before, DIPG affects children and this could be the answer to why.

Integrated Molecular Meta-Analysis of 1,000 Pediatric High-Grade and Diffuse Intrinsic Pontine Glioma - graphical abstract.jpg
By Alan MacKay et al. (2017) – Integrated Molecular Meta-Analysis of 1,000 Pediatric High-Grade and Diffuse Intrinsic Pontine Glioma (Mackay, Alan et al.Cancer Cell. 2017 Oct 9;32(4):520-537.e5, doi:10.1016/j.ccell.2017.08.017, CC BY 4.0)

Furthermore, scientists who have studied DIPG, have identified the epigenetic and genetic mutation in the pons. When cells, that use DNA to create new cells or to carry out various functions in the body, are unable to do so because the DNA becomes damaged, it is called genetic mutation. These mutated cells are why cancers are caused. Through genetic sequencing, researchers have learned more about the exact genetic mutations that cause DIPG. More studies are underway.

Dr. Eric Raabe, at John Hopkins University, is studying the effect of this genetic mutation on the formation of DIPG. He has found in DIPG, the cancerous cells multiply more than necessary which makes the tumor grow quickly. Through his reach, Dr. Raabe found that the overactive behavior of an enzyme called TET causes the cancer cells to multiply more than necessary. This may be the cause and targetting the enzyme may help in finding a cure.

Join Marc Jr Foundation’s efforts to spread awareness about DIPG and fund research to find a cure for it. So that the next time, when we talk about DIPG, we can talk about DIPG survivors.

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Sources: 1, 2, 3

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DIPG Treatment: What Are The Options Available?

DIPG, Treatment, Brain Tumor, Children, Brain, Health, Marc Jr Foundation, DIPG Treatment

No cure has been found for Diffuse Intrinsic Pontine Glioma (DIPG) yet but efforts are being made to find a cure. However, there are steps that can be taken to ensure that your child goes through less pain. Let’s understand what is the current scenario and why certain conventional treatment options do not work permanently.

Why brain surgery is not possible:

  • Unlike other tumors, DIPG cannot be removed through surgery. DIPG occurs in the pons of the brain stem. A medical professional cannot conduct surgery in that part without damaging the brain tissue surrounding it, making surgery highly dangerous.
  • DIPG is not a well-defined tumor. It spreads between brain cells and has no definite boundaries. It also grows rapidly. This is another reason why surgery is not possible.
  • However, sometimes, when MRI scan results are atypical, a medical professional may need to perform a biopsy and extract a small part of the tumor for diagnosis. Also, surgery may be performed in case of hydrocephalus (build-up of pressure in the brain due to DIPG). Endoscopic third ventriculostomy (ETV) is performed to treat this condition. When this is not possible surgery may be performed to place permanent shunts in the brain.
DIPG, Treatment, Brain Tumor, Children, Brain, Health, Marc Jr Foundation, DIPG Treatment
Until a cure is found, we at Marc Jr Foundation will not rest.

About DIPG and radiation therapy:

  • Radiation therapy is only a temporary form of treatment and the only one that can make the DIPG tumor shrink.
  • Radiation therapy can help provide relief from various symptoms of DIPG like nausea, fatigue, imbalance, loss of muscle movement, blurry vision etc.
  • After a short span of time, the tumor will begin to grow again. On average, radiation therapy increases the survival time of a DIPG patient by three months.

Experimental chemotherapy and its impact:

  • Around 250 trials have been conducted in the last three decades where chemotherapy drugs have been used on DIPG patients. However, they haven’t proven useful. Studies are being conducted even today in this field.

Alternative therapy:

  • Depending upon personal beliefs, alternative therapy options like acupressure, acupuncture, massage, use of herbs etc. can help in managing the pain that arises because of the growth of DIPG tumor or due to the side effects of radiation therapy and experimental therapy.

To know more about DIPG, you can read our other blogs and educational resources. Marc Jr Foundation is always there for you.

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Sources: 1, 2, 3

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5 Things About DIPG That Will Help Us Understand It

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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.

Typical MRI appearance of diffuse intrinsic pontine glioma (DIPG) | Katherine E. Warren (2012) [CC BY 3.0]
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
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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Diffuse Intrinsic Pontine Glioma (DIPG)

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What is a Diffuse Intrinsic Pontine Glioma (DIPG)?

DIPG stands for Diffuse Intrinsic Pontine Glioma. It is commonly referred to as diffuse pontine glioma, diffusely infiltrative brainstem glioma, and brainstem glioma. The Marc Jr Foundation, and most of the organizations that we collaborate with use the name diffuse intrinsic pontine glioma (DIPG).

In simple words, DIPG is a rare brain tumor that occurs in the Pons, the most delicate area of the human brain. The brain and the spinal cord are connected with a brainstem. The three distinct parts of the brainstem are Mid brain, Pons and Medulla oblongata. DIPG is a cancer of the Pons which serves as the message system between several areas of the brain and controls many critical functions such as breathing and blood pressure.

DIPG - Structures of the brainstem
Structures of the brainstem. Credit: Wikipedia.

DIPG is considered one of the most dreaded forms of childhood cancer mainly because of the location of the brain that it affects and due to the way it infiltrates the normal brain tissue. It affects approximately 500 children each year in the United States with a peak incidence in children around 3 to 9 years of age. It affects girls and boys equally and spans across all social, racial, and religious groups.

There is no known cause of the DIPG and it is a hard pill to swallow. This cancer hasn’t received enough research funding to find a cure and it comes with a zero survival rate that has not improved over the years because of the lack of new research funding. The Marc Jr Foundation is committed to funding this work.

If you would like to join the fight for a cure to defeat DIPG and help families dealing with it, please Donate for a cure today!

Read more about Marc Jr Foundation at marcjr.org and follow our Facebook page.