The RICKERS
RONG
SCHOLARSHIP
AWARD
IN LOVING MEMORY OF BRISON RICKER
Every Voice Matters
Your voice alone may be quiet, but when we join our voices together, we make a sound that can change the world!
Stand Together Against DIPG
Brison Christopher Ricker 1/4/2001 - 12/23/2017
Your Life was a Blessing, Your Memory a Treasure,
You are LOVED beyond Words, and Missed beyond Measure.
What is DIPG?
Diffuse intrinsic pontine glioma (DIPG) is an extremely invasive brain tumor found in a part of the brain stem called the pons, located at the base of the skull. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance. Pontine gliomas grow quickly, so symptoms can appear suddenly and progress rapidly because the tumor is fast growing and aggressive. Doctors have referred to DIPG as the WORST type of cancer in the WORST possible place.
DIPG affects children almost exclusively. Approximately 200-400 children in the United States are diagnosed with DIPG each year. These children are typically between the ages of 4 and 11, however there are babies to young adults diagnosed.
As a DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. They also have problems with walking, coordination, speech, chewing, and swallowing. As the tumor progresses, it also interferes with breathing and heartbeat, which ultimately results in the child’s death.
What Causes DIPG?
Scientists do not yet know what causes DIPG, and the cancer is so rare that it hasn’t received nearly enough research funding to find a cause, a cure, or even better treatment options. Survival rates have not improved much over the last few decades due to this lack of new research.
What is the prognosis for a child diagnosed with DIPG?
Medical advances in the past 40 years have greatly improved the survival rates for children diagnosed with most types of cancer. For some cancers, the medical advances have been extraordinary. For example, the survival rate for children with acute lymphocytic leukemia has increased from less than 10 percent in the 1960s to nearly 90 percent today. Overall, the survival rate for children with cancer is around 83 percent.
But these medical advances have done nothing for children with DIPG. Brain tumors remain the most common cause of cancer-related death in children, and DIPG is the leading cause of death from pediatric brain tumors. A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago. There is still no effective treatment and no chance of survival. Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. The median survival time is 9 months from diagnosis.
Pediatric Cancer
5-Year Survival Rates
Every single day, 9 children in the united states are diagnosed with a brain tumor. Brain tumors are the leading cause of cancer-related death among children.
You think pediatric cancer is rare? Chances of someone winning the lottery is 1 in 175,000,000. Chances of a child getting cancer, 1 in 285.
IT IS NOT RARE!
What is the treatment for DIPG?
Radiation
Radiation is part of the standard course of treatment for DIPG patients, as it is the only form of treatment that has proven benefits. For roughly 70% of DIPG patients, radiation causes the tumor to shrink, which provides relief from many of the symptoms associated with DIPG.
The benefits of radiation, however, are only temporary, providing what is called a honeymoon period. Even for those patients whose tumors shrink during radiation, the treatment does not increase their chances of survival, and the tumor begins to grow again within months. Because DIPG patients who do not undergo radiation have a median survival length of roughly 5 months, radiation therapy typically extends a patient’s life by about 3 months.
Proton radiation therapy has become popular in recent years for many types of cancer, but most doctors and radiologists do not see a benefit in using this treatment for DIPG tumors. Proton therapy’s primary benefit is that it relies on a proton beam that is more precise than the electron beam used in traditional radiation. This benefit is valuable for solid, well-defined tumors because it allows the radiologist to attack the tumor while sparing the surrounding, healthy cells. This extra precision is not beneficial for DIPG, however. Because a DIPG tumor does not have well-defined edges – the tumor cells spread through the pons, intertwining with the healthy cells – radiation cannot be limited to the solid mass, but instead must extend to the areas around the tumor.
Numerous clinical studies have attempted to improve the effectiveness of radiation by combining radiation with radiosensitizers, which are drugs intended to make cancer cells more likely to die from the radiation. None of the studies so far have shown any benefit to adding a radiosensitizer.
Chemotherapy
In the past 30 years, DIPG patients have participated in more than 250 clinical trials. These trials have involved a wide array of chemotherapy drugs – sometimes alone and sometimes in combination with other drugs. None of these studies have shown any benefit in either the likelihood of survival or the median length of survival.
Doctors and researchers are actively searching for effective chemotherapy agents. Given the increased understanding of the biology of DIPG tumors, these new approaches can be tailored to the particular characteristics of the DIPG tumor in ways that prior trials could not. These recent developments have given doctors and researchers reasons to be optimistic that they will develop effective treatments for DIPG in the future.
Biopsy
A biopsy is a sample of tissue removed from the body for testing. For many tumors, a biopsy is a standard diagnostic tool because it allows the doctors to determine the tumor’s precise characteristics.
Until a few years ago, doctors did not perform a biopsy to diagnose DIPG. They instead diagnosed the disease based solely on a patient’s symptoms and MRI scans. Doctors have not traditionally performed biopsies for two reasons: (1) the risk of causing serious neurological damage was high, and (2) there was little benefit to doing the procedure because the results of the biopsy did not affect how the patient would be treated.
Biopsies are becoming much more common today. The risk that a biopsy will cause neurological damage has been greatly reduced as a result of recent technological advances. As part of a surgical procedure known as a “stereotactic” biopsy, a computer relies on MRI scans of the child’s brain and tumor to guide a thin needle into the tumor to extract cells, while avoiding the critical nerves that run through the pons.
Given their increased safety, stereotactic biopsies have been part of the standard care for DIPG patients in Europe for the past decade. While the practice in the U.S. is moving in this direction, there has been more resistance. The main objection has been from doctors who saw little benefit to the procedure because it would not affect how the DIPG patient would be treated. Given this resistance, doctors in the U.S. now usually perform biopsies only on “atypical” brainstem tumors – those that cannot be clearly identified as a DIPG or a different type of brainstem tumor based on the MRI. In this situation, the biopsy is critical to determining how to treat the patient because, unlike for DIPG, effective treatments are available for other brainstem tumors.
While not all DIPG patients undergo a biopsy in the U.S., biopsies are becoming more common today even for “typical” DIPG tumors. Recent research has shown that not all DIPG tumors are the same. New clinical studies are attempting to personalize the course of treatment for each DIPG patient based on the particular characteristics of each patient’s tumor. Those characteristics can be determined only by performing a biopsy.
The increase in biopsies has been a critical factor in the development of our understanding of the biology of DIPG tumors.
Surgery
Unlike many brain tumors, a DIPG tumor cannot be removed through surgery. Attempting surgical removal of a brain stem tumor would likely cause severe neurological damage and could even be fatal.
Surgery is not an option for two reasons. First, because the pons is located in the center of the brain, a surgeon could not get to the tumor without damaging the surrounding portions of the brain. Second, even if the tumor could be accessed, total removal would be impossible. A DIPG tumor is not a solid, well-defined mass like some tumors. Instead, the tumor cells spread out between the healthy brain cells. Because the tumor cells could not be entirely removed without also removing the healthy cells, even if surgery were performed, the remaining cells would continue to divide and the tumor would soon return.
Alternative Treatment Options
With there being no hope offered to parents that have just been told the devastating news that their child is going to die, many parents spend countless hours researching for other treatments and options. Many parents have taken their child to other states, even other countries for cutting edge treatments that sound more promising than what the standard of care treatments provide. Sadly when parents do this they also need to become an advocate and fundraiser because none of these alternative treatments are covered by insurance, leaving parents to pay out of pocket. They are extremely expensive, plus travel costs, loss of work, etc. This puts a great financial strain on many. Some are very fortunate to have a great support system so that the funds needed do not become an issue, however most are left with no choice but to do radiation and make the most of the precious time they have left. Even those who do get the opportunity to receive cutting edge treatments, not yet approved by the FDA, eventually are taken by this horrific disease. However, they generally do have a longer life, many times better quality of life, are able to create more memories, and spend additional time with loved ones. This makes these treatments priceless.
These treatments are also years ahead of what is being done in the US because the FDA does not allow the research & trials needed to find a cure. Many parents feel these treatments offer hope and their best option of saving their child.
DIPG, for all its difficulties, presents an opportunity for ALL forms of cancer. It is one of the most resistant of all cancers to chemotherapy treatments; it affects primarily children (whose treatment has historically led to innovations in many other forms of cancer), and with a “dismal” prognosis, alternatives are few.
Put together, these obstacles offer researchers a chance to revolutionize cancer research and prevention. It is even suggested that a cure to DIPG may result in a cure for almost every other type of cancer. We strive to generate the resources necessary for doctors to study DIPG and implement the findings in hope of curing DIPG, and hopefully all cancers.
Yet sadly, ALL childhood cancer research funding receives only 4% of all the National Cancer Institute's Research funds.
In just 3 days, americans spend on Starbuck's coffee what the federal government spends on childhood cancer research IN A YEAR! THIS NEEDS TO CHANGE!
