DIPG: Diffuse Intrinsic Pontine Glioma
Highly aggressive and hard to treat brain cancer. The tumor is found in the main area of the brainstem called the pons, which controls vital functions such as breathing, blood pressure, and heart rate. It also effects nervous systems such as eye movement, balance, and eating and swallowing.
Approximately 200-400 children in the U.S. are diagnosed with DIPG each year. Average age of diagnosis is 5-9, but can occur at any age of childhood.
DIPG cannot be removed because the malignant cells intertwine with healthy cells in the brainstem.
The average survival time from diagnosis is 9 months.
Only 10% of children with DIPG survive 2 years following diagnosis, and less than 1% survive for 5 years.
There have been over 200 clinical testing with chemotherapy drugs for patients with DIPG with little to no success.
2009 was the first ever study on DIPG cells in a lab. Since the tumor is inoperable, families are asked to donate the child's tumor after death to help find a cure. 80% of DIPG tumors have a mutation in histone 3, one of the proteins that packages DNA.
Of all the brain cancers in children, DIPG is by far the deadliest. With all medical advances for all other brain cancers, DIPG has the same prognosis as a child diagnosed 40 years ago. There is no effective treatment. There is NO CURE. NO chance of survival.
Treatments are: Radiation for 6-7 weeks with steroids, and or Experimental Chemotherapy. Surgery is not an option because of the location of the tumor.
Radiation on the tumor can cause the tumor to shrink, but it only shrinks it for a small period of time. Typically it gives the patient 3 more months of life. Once the tumor starts growing back, it grows back aggressively and they usually won’t use radiation again because it won’t shrink the the tumor again.
Typically when a child undergoes radiation, there is swelling in the area that is being treated. The back of the head looses hair and becomes irritated and feels like a sunburn. The child's face becomes very swollen, eyes will cross and some become blind. The steroids that they take causes weight gain. Most children can no longer walk.
When Brinley was diagnosed we were told that if we did nothing, she had 2-6 weeks of life, with radiation, 9 months to 2 years. What an impossible situation and outlook.
When Brinley was diagnosed, she couldn't walk but a few steps and would fall over. She had a hard time focusing her eyes and had slurred speech.
With many prayer warriors, and God’s blessings, Brinley has finished her 7th week of radiation. She has had no side effects of radiation, besides losing her hair on the site. Her cheeks are a little puffy and she has gained weight, but her vision is perfect and she is running and playing.
Her mother and father, Brittany and Adam, are looking at options as to what to do, and where to go next. Brinley will have a follow up MRI around July 20th to see what the tumor is doing. Please help us pray that Brinley will be the 1% and her cancer will go into remission and stay that way.
Share Brinley's story, donate some time, send a letter to your congressmen. Everything helps when we spread more than just awareness.