Julia Barbara Foundation

FIGHTING TO CURE DIPG - BRAIN STEM TUMORS   

DIPG - Brain stem tumors

Diffuse intrinsic pontine gliomas (DIPG) normally occurs children and there is a 0% survival rate.  The tumor often appears in children between the ages of 5 and 7. (However, this was not the case with Julia who was diagnosed at 2 1/2 years old). DIPG is the primary cause of brain tumor related deaths in children, and most children only survive for 9 months after diagnosis.

DIPG materializes in the part of the brain stem called the pons. The pons is a vital portion of the brain since it controls breathing, heartbeat, eye functions, swallowing, and balance.  Thus, children with DIPG often exhibit signs of facial weakness, abnormal eye movement, loss of muscle control, difficulty walking, imbalanced limb movement, trouble chewing or swallowing, hearing issues, insomnia, loss of bladder or bowel control, trouble breathing, nausea, and headaches,  Normally, children diagnosed with a brain stem tumor die a horrible death.  They lose control of most of their bodily functions but still retain the ability to comprehend their situation. Ultimately, DIPG children fail to breathe or their hearts stop beating.

As of yet, the causes of DIPG are unknown.  Current research suggest that brain stem tumors are not caused by environmental factors or inherited. There is some research suggesting that DIPG is linked to brain development. Recently, the exact genetic mutations associated with DIPG are being analyzed by Researchers in an hope to find the cause and in an effort to engineer drugs to effectively treat brain stem tumors. 

These types of tumors are highly aggressive and grow rapidly. DIPG symptoms appear quickly and can be misdiagnosed.  A DIPG diagnosis usually occurs after the child submits to a MRI Scan or a CAT Scan.  Surgical biopsies (surgically removing a minuscule amount of tumor tissue) are not often recommended to confirm the diagnosis due to the risks.  Recently, stereotactic needle biopsies are being utilized as a means to confirm DIPG, especially if the imaging is atypical or inconclusive.

Currently, there are no effective treatment methods to permanently eliminate the tumor. This type of tumor is inoperable since it is located in the brain stem which controls major neural structures, and it is not a solid mass.  Radiation is the most common treatment used to reduce DIPG symptoms.  Normally, the tumor returns 6 to 9 months after radiation treatment.  A second, shorter round of radiation treatment, can sometimes be utilized to increase a child's life span.  If this method is used, the tumor usually reappears in half the amount of time as the previous recurrence. Sometimes, radiation necrosis (destruction of healthy cells) can occur as a side effect from radiation treatment, and the necrosis can spread like the tumor. As of now, clinical trials have not shown that chemotherapy or other drug therapies increase survival. 

Steroids are commonly used as a method to reduce fluid in the brain (hydrocephalus). This fluid is often caused by radiation and tumor growth. Long term use of steroids can have adverse effects. Some of the side effects are: increased appetite, weight gain, insomnia, moodiness, increased blood pressure, fatigue, muscle weakness, increased blood sugar and upset stomach.

Private funding for research has recently increased due to greater public awareness and contributions.  There is little government funding for research programs (only .0005% of the funding allocated for cancer research is provided to DIPG research). This is unfortunate since approximately three hundred DIPG children die a year.  Finding a cure for DIPG could also be the gateway into curing other forms of cancer, since brain stem tumors are highly evasive and grow rapidly.

Brain stem tumors and available treatment options astronomically alter children's lives. This disease kills children and steals their smiles. Happy children become adults overnight due to severe treatments with radiation, steroids and experimental drugs. Parents have no other options but to subject their children to such extreme measures in the hope that they can theoretically buy more time, just a few more months.  But, as of now, in the end the children still die.  As a community we must stop this, no more families should have to suffer.  PLEASE HELP FIGHT DIPG!!!!!


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