DIPG or diffuse intrinsic pontine glioma is a type of tumor that starts in the brain stem, the part of the brain just above the back of the neck and connected to the spine. The brain stem controls breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat. These tumors are called gliomas because they grow from glial cells, a type of supportive cell in the brain.

What are the stages of DIPG?

DIPG falls into the Glioma staging system, so they can be classified according to the four stages below based on how the cells look under the microscope. The grades are from the least severe to the most severe.

• Low Grade: Grade I or II means that the tumor cells are the closest to normal.
• High Grade: Grade III or IV means that these are the most aggressive tumors.

The main issue with DIPG is that most of these tumors are not classified by grade because surgery to obtain tissue by biopsy or to remove the tumor is not safe because of the location of the tumor. When these tumors are biopsied, they are usually grade III or grade IV tumors, which tend to behave very aggressively. Most of the tumors are diagnosed by their appearance on MRI.

How common is DIPG?

• About 10% to 20% of all childhood brain tumors are DIPG or brainstem gliomas.
• They are more common in children between the ages of 5 and 10 years, but can occur at any age in childhood. Though more rare, they can also occur in adults.

What are the symptoms of DIPG?

Symptoms usually develop rapidly in the majority of patients because of the fast growth of these tumors.

The most common symptoms related to diffuse intrinsic pontine glioma include the following:

• Problems with balance and walking
• Problems with the eyes (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision)
• Problems with chewing and swallowing
• Nausea and vomiting
• Morning headache or headache that gets better after the child vomits
• Facial weakness or drooping (usually one side)

How is DIPG treated?

• Radiation therapy — currently, is the primary therapy for newly diagnosed DIPG in children older than 3. It uses high-energy X-rays from a specialized machine or other types of radiation to kill cancer cells and shrink tumors (stop them from growing). Radiation provides a temporary response in most patients but does not provide a cure.
• Chemotherapy — is being used along with radiation therapy and other biologic agents in multiple trials to decide if we can find ways to improve the survival rates of patients with DIPG.
• Surgery — is rarely used to diagnose DIPG because of the risks involved in surgery in this area of the brain. There are cases where a biopsy can be obtained safely, but the use of surgery to remove the tumor is very rare.
  • A biopsy (removal of affected tissue to be examined) may be done to decide the tumor’s type and grade.
  • If the biopsy finds cancer cells and the patient is still in surgery, the surgeon may take out as much tumor as can be removed safely. Depending on where the tumor is located, this might not be an option.

What are the survival rates for DIPG?

Unfortunately, the survival rate for DIPG remains very low. At this time there is no silver bullet for this disease. There are clinical trials that can help prolong the life of these children. Please contact us if your interested in assistance in locating a clinical trial in your area.

For more information regarding DIPG, please visit our about us page. Or submit your information via our contact form, and our team will reach out to assist with your needs.

DIPG children / DIPG warrior of the week. We would like everyone to meet Londyn. She received her care package from Amazing Mia the other day. We love to see smiles on their faces. We have loved this family from the beginning. Janine fought every day to get treatment for Mia. Unconditional love is what we have gained from this diagnosis. The world looks completely different and we will never be able to not see what childhood cancer truly is. It’s unfair, unresearched, and unbreathable moments. The only thing we have found is the amazing and wonderful people who chose to bring joy. We need to help these DIPG children.

Did you know? Childhood cancers represent the leading cause of death in children over the age of 1. Those numbers only represent approximately 1%‒3% of all cancers diagnosed annually in the United States. There are several initiatives centered around childhood cancer care and research data. Through enhanced data sharing, we can improve our understanding of cancer biology to improve preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer.

If you don’t already please choose to help, bring happiness, and love to everyone in this battle. We love you Mia forever. Janine you are amazing and I see why your daughter was so amazing.

We would like to assist other parents and children dealing with this terrible disease. Please use the donate page to submit a donation or our contact page to request a care package for a child. Let’s bring awareness and help these children and help comfort these families in need.

Today 5/17 is DIPG AWARENESS DAY. These children watch their friends thrive and do the things that they SHOULD be doing. I ask of nothing more than for you to just share the information about DIPG awareness. Did you know only 4 percent of all federal cancer research funding goes towards pediatric cancer? Why are children only getting 4 percent of funding?

DIPG is not genetic! It isn’t a disease that runs in families, nor is it something that can be tested in utero or at birth. It could happen to any child at any time. By the time you start to see symptoms, it’s often too late. It’s a monster and Mia, along with countless other children didn’t deserve to die so young before reaching the many milestones they deserve in life. DIPG can’t be cured with diet, or some magic mouthwash, or by changing your home cleaning products. It can’t be cured with supplements or eating salmon until it comes out of your ears. There are things that can help with symptoms like THC and CBD, but it isn’t a cure.

Our only wish in this life is that were able to live long enough to see this monster become a thing of the past. Let’s honor these children and spread awareness. They deserve it! We will miss our Mia forever and will hold you close until we see you again. We Love U MORE!!!!!!

For more information regarding DIPG, please visit our website. Or submit your information via our contact form, and our team will reach out to assist with your needs.

I read an article recently about what NOT to say to someone who is grieving. I thought I’d post (daily) the ones that hit home. I may or may not wholeheartedly agree with these statements. But they aren’t something I want to hear and could possibly justify a throat punch….

“God never gives us more than we can handle.

How do you know God never gives us more than we can handle?

Seriously. How do you know that? Did you read that in Scripture somewhere? Did God come down and tell you that?

Because from everything I know about God, two things are absolutely clear:

God does not “give” tragedy to people. God does not cause evil. A God who causes evil (for testing or because he needs another angel) is an evil God. I understand that there is a more nuanced philosophical discussion that could happen here. But at the root of it, I will always insist that God never be the cause of evil.

God allows people to find themselves in situations that are bigger than they can handle. That’s the nature of learning to trust God. Understand God’s loving care for us. It’s all bound up in the idea that when we are out of control, God is still sovereign. He is still working the waves. The darkness and death into something, not that we can control, but something that can be redeemed.

So, no, on all accounts. This statement misses the point and should be avoided, as well.” Hence, what NOT to say.

For more information about what we do, please visit the about us page.