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.
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
Source: St Jude Childrens Research Hospital
In their quest for a cure, DIPG children must move from one experimental protocol to another enduring treatments with many side-effects which would be unacceptable with any other diagnosis. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day. The cure starts now...
Source: The Cure Starts Now
Our only hope for Beatrice is to get her into a clinical trial and she has been accepted into a trial at Pittsburgh Children's Hospital. It is a Pilot study that has been in progress for over 2 years. The trial will require going to Pittsburg every 3 weeks for a shot for up to 8 sessions. She will have regular MRIs. If she is looking good after those 8 sessions she will continue with the treatment every 6 weeks for up to 2 years.
Based on web research that I've done it seems that there is news that some children are doing better than expected with this trial but still not surviving. The folks running the trial cannot provide us with information on mortality and life expectancy because it is a current trial and any information that gets out to the public could hurt their chances of running an effective trial. I respect that so the only news we have isn't what we want to hear but it's better than what we knew 2 months ago.
If it doesn't work there are other treatment options at MD Andersen and St. Judes as well as other trials that are coming out. However, trials for treatment that are not part of the initial radiation are rare and it is possible that we will not find another one that Bea will qualify for.
Source: The Cure Starts Now
Our only hope for Beatrice is to get her into a clinical trial and she has been accepted into a trial at Pittsburgh Children's Hospital. It is a Pilot study that has been in progress for over 2 years. The trial will require going to Pittsburg every 3 weeks for a shot for up to 8 sessions. She will have regular MRIs. If she is looking good after those 8 sessions she will continue with the treatment every 6 weeks for up to 2 years.
Based on web research that I've done it seems that there is news that some children are doing better than expected with this trial but still not surviving. The folks running the trial cannot provide us with information on mortality and life expectancy because it is a current trial and any information that gets out to the public could hurt their chances of running an effective trial. I respect that so the only news we have isn't what we want to hear but it's better than what we knew 2 months ago.
If it doesn't work there are other treatment options at MD Andersen and St. Judes as well as other trials that are coming out. However, trials for treatment that are not part of the initial radiation are rare and it is possible that we will not find another one that Bea will qualify for.
