Four days away from her fifth birthday, Braylynn Lawhon was diagnosed with DIPG. Since then, her mother, Allyn Parker began documenting Braylynn’s journey and her battle with DIPG and shared it on social media to spread awareness.
It is surprising but true that despite the death of hundreds of children every year due to DIPG, the awareness for this glial tumor is scarce. Parker’s efforts, in spite of all the pain she was going through as a mother, made many in the world aware about DIPG.
A photograph that she shared showing Braylynn Lawhon and her crying grandfather next to her had gone viral on the Internet. Her grandfather was diagnosed with bone marrow cancer and ALS – he passed away soon after Braylynn did in January 2018.
Parker wrote in her Facebook post, “We all thought that they would outlive the rest of us…and we certainly never thought that my precious little Braylynn would be the first to go. Last year was hard for us, but I can’t even begin to explain how difficult this year will be and has already been. In a few days I will have to bury this beautiful little girl. Months, maybe even weeks, later, I will have to bury my father.” The photograph made an impact that no amount of words ever can.
The treatment for the little girl cost about $18000 to be spent every 3-7 weeks. The family had started a GoFundMe page where many people came forward to help. And this is a story similar to what hundreds of families go through every year.
In such a state of shock, Parker had planned a princess-themed funeral for her sweetheart. She knew that the child deserved the best. As she passed through the most difficult phase of her life, she remembered to share her daughter’s story in the hope that no other mother has to go through what she did.
The Marc Jr Foundation is committed to finding a cure for DIPG and saving lives. Your smallest act of support, will mean the world to the families battling DIPG. Let’s make a difference together.
A shocking fact – for about two decades now no new drugs have been licensed to treat brain cancer in adults and children! But this new drug could change things and become the first drug designed to target DIPG.
The scientists at The Institute of Cancer Research (ICR) in London have been working in a new drug that can kill cancer cells. Trials in mice have been successful and clinical trials in children are expected to begin in 2021.
Five years ago in 2014, the team of scientists at ICR discovered that in about 75% of DIPG tumors, the mutation of ACVR1 genes is present. This is what made them focused to research a drug that could target this gene and so, hopefully, be curative for DIPG. Teaming up with the Structural Genomics Consortium in Oxford, they created a new series of molecules to target ACVR1.
Thereafter, they tested 11 prototypes of the new drugs in the cancer cells that were grown in the laboratory and positive results were seen in two of the 11 prototypes. These prototypes not only killed the cancer cells but showed very little effect on the healthy cells in the brain. When tested on mice, it was shown to increase the survival rate by 25%. A new company M4K Pharma has taken this on as their first project to develop affordable drugs for diseases affecting children.
Understanding the biology of DIPG tumors has helped researchers develop new and effective drugs to make life better for those battling DIPG. More awareness about DIPG and its research can make it a thing of the past and give the gift of life to hundreds of children.
Marc Jr Foundation appeals you to join hands with us to bid adieu to DIPG and not to our children.
No cure has been found for Diffuse Intrinsic Pontine Glioma (DIPG) yet but efforts are being made to find a cure. However, there are steps that can be taken to ensure that your child goes through less pain. Let’s understand what is the current scenario and why certain conventional treatment options do not work permanently.
Why brain surgery is not possible:
Unlike other tumors, DIPG cannot be removed through surgery. DIPG occurs in the pons of the brain stem. A medical professional cannot conduct surgery in that part without damaging the brain tissue surrounding it, making surgery highly dangerous.
DIPG is not a well-defined tumor. It spreads between brain cells and has no definite boundaries. It also grows rapidly. This is another reason why surgery is not possible.
However, sometimes, when MRI scan results are atypical, a medical professional may need to perform a biopsy and extract a small part of the tumor for diagnosis. Also, surgery may be performed in case of hydrocephalus (build-up of pressure in the brain due to DIPG). Endoscopic third ventriculostomy (ETV) is performed to treat this condition. When this is not possible surgery may be performed to place permanent shunts in the brain.
About DIPG and radiation therapy:
Radiation therapy is only a temporary form of treatment and the only one that can make the DIPG tumor shrink.
Radiation therapy can help provide relief from various symptoms of DIPG like nausea, fatigue, imbalance, loss of muscle movement, blurry vision etc.
After a short span of time, the tumor will begin to grow again. On average, radiation therapy increases the survival time of a DIPG patient by three months.
Experimental chemotherapy and its impact:
Around 250 trials have been conducted in the last three decades where chemotherapy drugs have been used on DIPG patients. However, they haven’t proven useful. Studies are being conducted even today in this field.
Depending upon personal beliefs, alternative therapy options like acupressure, acupuncture, massage, use of herbs etc. can help in managing the pain that arises because of the growth of DIPG tumor or due to the side effects of radiation therapy and experimental therapy.
To know more about DIPG, you can read our other blogs and educational resources. Marc Jr Foundation is always there for you.