“Sometimes unnecessary. “Clinicians often shy away from focusing

“Sometimes superheroes reside in the hearts of small children fighting big battles.”  Did you know that the National Cancer Institute researchers only give four percent of funding to pediatric cancer altogether? Within the United States cancer is the main cause in death beyond infancy. As a nation what can be done to help increase the survival rate of patients diagnosed with DIPG cancer?  Diffuse Intrinsic Pontine Glioma cancer known as DIPG is a brain tumor often found on the brain stem. DIPG is an inoperable brain tumor that mainly affects children aging from four to eight. Cancer patients that are diagnosed with DIPG have a zero percent survival rate due to the lack of support dominated by short term profits.   In the year of 1962, astronaut Neil Armstrong’s daughter passed away from the disease DIPG at just two years old. “Though Neil Armstrong lost his young daughter, Karen, to DIPG in 1962, protocols for treatment and life expectancy had not changed since that time” (Wetzel). Virtually to this day, fifty five years later no treatments nor prognosis for this disease have been advanced or changed in any drastic way.

“Approximately three hundred children in the U.S are diagnosed with DIPG each year (Diffuse Intrinsic Pontine Glioma). This disease only receives a small percentage from the four percent of research funded distributed for all of childhood cancers. Due to the low amount of funding it is now resulting in significant cuts, and causes less money benefitted to the children. Supporters who have donated their time, thoughts and money to the disease DIPG are spreading awareness to this horrible disease.

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       Since the disease DIPG is so rare many researchers feel that funding is unnecessary. “Clinicians often shy away from focusing on the disease because the outcome is brutal and not one drug nor cure has been confirmed” (“A new angle: Attacking DIPG”). The parents of the  child who is suffering from this disease has a completely different outlook from researchers. After being diagnosed many children have less than nine months to live and the parents can not do anything to change that. A mother who recently lost her sweet daughter Philomena to DIPG, is fighting for her child because she deserves more than point four percent. As soon as Philomena was diagnosed her parents looked for options, and were infuriated when they discovered there was nothing out there to help her.

Ben Franklin had stated “Justice will not be served until those who are unaffected are as outraged as those who are.” In over fifty years no treatment options have changed.  To researchers this disease may be rare but to parents affected by this disease it is not rare at all.     TreatmentTo help expand the life of a child who has the disease DIPG, doctors often look toward radiation as the standard treatment. “The standard of care for children with newly diagnosed DIPG is focal radiation therapy”  (Warren).   The therapy typically last six consecutive weeks for five days.

Many children endure several weeks of radiation to attempt to diminish the tumor. The result of children who show improvement in their neurological system is seventy five to eighty five percent after radiation therapy (Diffuse intrinsic pontine glioma). Radiation treatments only provide a short-term reprieve of tumor growth.

Therefore when radiation treatments are completed children are likely to instantly enroll in clinical trials. Radiation is likely to diminish symptoms for short periods of time but not a treatment nor clinical trial have shown to have a significant effect in the increase of life expectancy for children who have DIPG. Doctors often use clinical trials to improve their understanding of certain diseases. Doctors observe a study and create new treatments and drugs to use for clinical trials which lead to asses of effects for medical behavioral health results (“FAQs About Clinical Studies” 12).  Clinical TrialAnother way to expand the life expectancy of a child who is suffering from the disease DIPG is to rely on clinical trials.

In September of 2016,  Philomena Stendardo was diagnosed with DIPG. In the beginning Philomena received radiation which originally helped, but symptoms worsened and her health began to degenerate. A few months later the right side of Philomena’s body became completely paralyzed. Doctors told Philomena’s parents that there was not much they could do unless a clinical trial came up.

Rodriguez-Torres also lost his daughter to this horrific disease and created the “Live Like Bella Foundation” to help fund youth cancer research . As soon as Rodrigues-Torres found out that “North Carolina State University scientist Dr. Kenneth Adler discovered a drug that stopped cancer cells from spreading in the laboratory” he had sent samples of his daughters tumor to his lab to find out if the drug could possibly stop spreading her cancer cells (Newland). The drug Dr.

Adler had recently identified was only used in petri dishes and with mice. Philomena from Philadelphia would be the first human ever with cancer to use the experimental drug. The drug known as “Bio-11006, being a dual function inhibitor mucus secretion and inflammation, is an ideal drug to potentially treat various lung diseases” which was also initially approved through the FDA for a newly trial mainly for adults suffering from lung cancer. (Clinical Development of a Therapeutic Agent for COPD) Under the stipulation of compassionate use,  the “Live Like Bella Foundation” had helped Philomena track down this clinical trial.

“Philomena is patient 001. The first patient in the entire world to receive this medication for cancer” (Newland).   Within weeks Philomena’s parents had seen improvements. Philomena is now able to sit up by herself, get around with assistance and maneuver her right side. Dr. Adler believed it was too early to confirm if his discovered drug was responsible for the progress she had made. The Stendardo family was hopeful. Unfortunately Philomena still lost her battle to this monster of a disease on July 23, 2017.

 A new study is examined to raise the survival rate of children who are suffering from rare brain tumor. Scientists including Dr. Monje began to develop, and share cell studies of the patients DIPG cells that were examined in labs. Dr.

Monje and her colleagues gathered cell structures from sixteen patients from the United states and also from Europe. The importance of this study was to search for drugs that would cease or eliminate the growth of DIPG cells. To begin this process scientist performed highly extensive screening, to help find effetual compounds. Each DIPG cell line was tested as eighty three cancer drugs were scanned at once. The results found that the drug known as histone deacetylase inhibitors frequently decelerated DIPG growth. “Histones are a family of proteins that help package DNA into compact structures.” (“Studies Identify Potential Treatment Strategies for Pediatric DIPG Brain Tumors.”) After analyzing the genetic and screened data the scientists began to focus on panobinostat.

Panobinostat is a drug created for blocking several types of histone deacetylases. One experiment containing DIPG cells in pons within petri dishes with mice resulted in panobinostat regulating genes.  The panobinostat systematic injections will contribute to extending the survival rates by hindering DIPG growth. “Scientists found that the drug panobinostat may be effective at treating diffuse intrinsic pontine gliomas, the leading cause of pediatric brain cancer death.

” ( Lab ) Collected by scientists, experiments show that panobinostat could be effective for treating types of DIPG tumors. Overall scientists have learned that the drug panobinostat could work in pair with other combinations to decrease the tumor growth of DIPG cells.One known histone gene was discovered and is progressing to expand the life of children with DIPG. “Researchers working on the St. Jude Washington University Pediatric Cancer Genome Project discovered that nearly eighty percent of DIPG tumors have a specific mutation in the gene for a protein called histone H3” (“Studies Identify Potential Treatment Strategies for Pediatric DIPG Brain Tumors.”) Modifications of histones may prevent or advocate gene expression.

Researchers were experimenting to determine if mutant histone had similar functions in human cells. The histone H3 gene had an increased amount of acetylated histone compared to average who expressed the average histone gene of H3.The histone H3 “it is one of the most conserved and fundamental components of the histone complexes, and it has three variants, H3.1, H3.2 and H3.3 (A new angle: attacking DIPG) The examination of the mutant H3 histones determined by Andrea Piunti analyzed that specific nucleosomes mutant histones remained with acetylated and BRD proteins.

Medicating human DIPG microscopic cells with the drug investigational which is providing a wall for BRD proteins known as BET inhibitors, decelerated the cell growth contrasted with the control treatment (“Studies Identify Potential Treatment Strategies for Pediatric for Pediatric DIPG Brain Tumor.”)  According to Dr. Shilatifard. BET inhibitors supply potential therapeutic solution for DIPG. Conclusion”Despite decades of clinical research, the dismal prognosis and inevitable neurological decline has not changed for patients suffering from diffuse intrinsic pontine glioma. (Oncol).

As a nation what can we do to further expand the life expectancy for children who have the disease DIPG? Children are dying and families are suffering and still no one has the courage to do anything about this horrible disease. “Because there is no cause greater than the fight for our children’s rights to grow up to be adults” (StormTheHeavens). Today those who are magnanimous and are willing to help can be the first to beat this disease. One day parents can finally say that “0” percent is a number in the past with the contribution of others to spread awareness.  The ability of contributions is the reason we can ensure that one day each and every child will be granted the ability to grow up to be an adult.  Work Cited “A new angle: Attacking DIPG” 1 Jul. 2015 Meyer Cancer Center. 2 Jan 2018.

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