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.
“Science knows no country, because knowledge belongs to humanity, and is the torch which illuminates the world,” said Louis Pasteur whose discoveries has saved the lives of many people.
Today, even though we are moving forward technologically at the speed of light, we still have a very long way to go. Finding a cure and researching better treatments for DIPG is the need of the hour. As many researchers and good-hearted Samaritans are doing their best to find a cure for DIPG, a team of scientists has found a new way to treat it in the study named, “Recombinant Attenuated Poliovirus Immunization Vectors Targeting H3.3 K27M in DIPG.”
A team of researchers at Duke University in North Carolina, led by Dr. David Ashley have developed an immunotherapy treatment that could be used in the future to treat DIPG. The study that began in 2017, targets the H3.3 K27M mutation in DIPG by modifying the poliovirus. This mutation is found in 80% of the DIPG tumors.
If successful, the scientists plan to use this treatment as a vaccine through injection into a muscle to trigger immune responses towards the mutant H3.3 K27M gene. This mutation is also present in other high-grade childhood tumors.
The efforts of these researchers were featured on two segments in CBS’ 60 Seconds. Dr. David Ashley who is the Director of Preston Robert Tisch Brain Tumour Centre was awarded a research grant due to the combined efforts of ChadTough Foundation and Michael Mosier Defeat DIPG Foundation. More than 3 million dollars were required for researching this one method alone. Imagine the amount of money that would be required for multiple research methods and ultimately to find a cure for DIPG. Only through our joint, consistent efforts, we will be able to say goodbye to DIPG and give the gift of life to children.
Join Marc Jr Foundation’s efforts to raising awareness about DIPG and finding a cure for it.
DIPG is an aggressive and a hard to treat tumor that is present in the brain stem. As it has no definite boundaries, treating it is very difficult as there is a risk of damage to the surrounding brain cells. Radiation therapy has often been used as a form of treatment for DIPG as it temporarily shrinks the tumor, thereby reducing the pain. A more advanced form of treatment, known as Convection-Enhanced Delivery (CED) is shown to be more effective.
CED is when chemotherapy drugs are directly delivered to the tumor. It is a technique that has been gaining interest especially for tumors like DIPG that are in a hard to reach location and difficult to treat. CED can pass the blood-brain barrier (BBB) which the drugs that are ingested orally or taken intravenously cannot. The blood-brain barrier is the membrane that controls what drugs can pass from the brain to the brain.
Four catheters are implanted into the brain through surgery and through these catheters the drugs are released into the brain. One of the major benefits of CED is the decrease in the after-effects of radiotherapy such as nausea.
However, compared to radiotherapy, CED is expensive and often requires funding. Also, it is not widely available because of the problems in monitoring drug distribution but several clinical trials are underway for the same. For treatments like CED to gain momentum, more research needs to be carried out and there has to be an increased understanding of DIPG. When backed by sufficient resources, the clinical trials and the research can get impetus and be available as a treatment option for all soon.
Marc Jr Foundation is committed to finding a cure for DIPG. With your support, we can make it happen.
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.