FREQUENTLY ASKED QUESTIONS | F.A.Q.

ABOUT GRECO AND DIPG

What is Diffuse Intrinsic Pontine Glioma?

A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons, ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.Source: The American Brain Tumor Association

 

The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.Source: Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones.

 

The standard treatment for DIPG is 6 weeks of radiation which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly.Source: St Jude Childrens Research Hospital

 

How did Greco get DIPG?

The doctor has assured us that it is not environmental.  He did not get this tumor because of anything I did during pregnancy or foods he has eaten or other exposures in the environment.  There is no explanation as to why he got this tumor.  Approximately 300 children are diagnosed each year, which makes this tumor very rare.

What is Greco’s prognosis?

His oncologist has given us a timeline of 2 months to 2  years.  If we did nothing at all we would probably have only the 2 months left.  However, the MRI shows the tumor is slow growing and doesn’t have a very good blood supply.  Our radiologist believes the radiation can shrink the tumor, which would probably grow back, but might give us the 2 years.

How long has Greco had this tumor?

There is no way of knowing this.  It could have started growing in utero or as little as 1 month prior to discovery.  But it was discovered on August 4th, 2013.  He was just 3 months shy of his 3rd birthday.

Is DIPG hereditary?

No, DIPG is not hereditary.

What treatments will Greco receive?

For the time being, we are opting for radiation treatments.  Greco is scheduled for 29 treatments and an MRI will be performed after the treatments to determine if the tumor has gotten smaller.

Where is Greco being treated?

Greco’s oncologist is Stacie Stapleton at All Children’s Hospital in St. Petersburg, FL.  His Radiologist is Dr. Harvey Greenberg at Florida Hospital in Tampa, FL.

What does Greco and his family need most of all?

A miracle.  We would like for everyone that reads this site to pray for a miraculous healing for Greco.  So many websites about DIPG will tell you that there are no survivors.  We want Greco to be a survivor and be a testimony to the goodness of God.  We believe in prayer, we believe he can be healed and we believe in miracle.  That is what we need most of all.  Please pray for our son.

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