Dear Senator Reed,
We’re writing to ask your support for HRes 69, the National DIPG Awareness Resolution, in 2019, and to share our child’s brain cancer story. The resolution recognizes a day for educating the public about the importance of investing in pediatric cancer research through sharing the stories of DIPG families. These stories are important for promoting the search for safer, gentler, more effective solutions for treating brain tumors in children.
On March 4, 2016, we sat with our 19-year-old son, Neil, as he received a diagnosis of diffuse intrinsic pontine glioma (DIPG), a rare inoperable form of brain cancer. He also received a prognosis of three months life expectancy… or six months, if he chose to undergo six weeks of radiation therapy, by which time, he was told, there may arise a hopeful solution. DIPG families have been listening to these same words for over 50 years, without any advancement in treatment. When Neil decided against radiation, we helped him research and develop a systemic whole body approach, combining alternative treatment strategies.
On June 4, Neil posted the following message on Facebook:
“Today is a bit of a strange day for me. It marks 3 months since being diagnosed with DIPG, the same time frame doctors originally gave me to live. According to the typical case, I shouldn’t be typing to you now.
“So why am I still here? Just some divine act of luck that decided to transcend science? No. There has definitely been some seriously divine luck, but science has not been transcended. Many things have come together to make this all happen as well as it has, but two deserve special note.
“Firstly, the importance of my mom’s understanding and applications of holistic health principles cannot be overstated. I never believed how important this dietary stuff was, but, it’s true, you really are what you eat, which makes me heaps of organic greens, consciously chosen meats, and precisely picked grains all knotted up with specialized supplements. Some may call this hogwash, but when you actually feel it help stabilize what’s considered one of the most malicious tumors, you tend to disagree.
“Secondly, this knot that’s all tied up about Burzynski needs to be let loose. When we first came down to Texas we obviously had no idea what kind of rats nest we were getting into with the FDA. My family and I took in the picture as given, weighing all probabilities, and decided this “renegade doctor” was worth the risk. A 30-year track record of anecdotal success paired with the fact that they were actually offering a clinical trial, something that requires enormous time and effort to put on, gave me more than enough confidence to give them a shot. Why waste their time and money on something they didn’t believe actually works?
“The FDA had to give the trial the green-light-go-ahead, which they did over a year ago. Then, suddenly, the day I began treatment, they decided to pull the plug from thin air, giving little more reason then “cuz we said so.” Thank God for a good judge who cared about human rights, or I might well just be another bug-on-a-rug.
“I have now been on treatment for a fairly significant portion of time and can confidently say it is helping. There is very real legitimacy to the claims of the Burzynski Clinic, and furthermore they have continued to show us nothing but the greatest human hospitality.
“Now, I continue to press on with these forces guiding my health. Only time will tell how I progress, but I approach tomorrow with faith. There are a lot of forces out of my control, but no matter what, I continually remind myself, I get to be alive here and now. I have found the present is a gift worth appreciating a little more.”
Later in June, we received a letter from from Vice President Joe Biden about the cancer moonshot project, which stated: “We will ensure that the patient community is heard, so that patients and their families are treated as partners in care and are given access to their own data and the opportunity to contribute to research.” It’s time for the patient community to be heard. DIPG families have many stories to tell. We all have knowledge, experience, data and heartache to share. Neil passed away February 19, 2017, and we want to assure that his death and suffering, and that of so many other children, was not in vain.
Please refer to the attached photos and the HRes 69 Senate packet, created by the DIPG Advocacy Group, and help us by leading the way to support HRes 69.
Wendy & Dean Fachon
This is an example of writing for advocacy. Senators Reed (RI) and Rubio (FL) will be leading the way for HRes 69 in the U.S. Senate in 2019. Incidentally, this coming year marks the 50th anniversary of the first man’s first step onto the moon. That was Neil Armstrong. Incidentally, he lost his daughter, Muffy to DIPG in 1962. And, incidentally, our son, Neil, was named for Neil Armstrong. We are inspired by coincidence and urge DIPG families and friends to call, write and visit their congressmen and senators to request support and share their stories. We are here to help people edit letters for impact. In fact, why not compile and publish these stories in a book to dedicated to advocacy and centered around the cause that has touched all our lives – finding a cure for cancer. The goal of this advocacy project is fifty stories, representing DIPG families and friends in all fifty states. DIPG stories from outside the U.S. would be a welcome bonus, because we want to know what the experience is like in other countries. Please submit advocacy letters, which include a call to action, story and pictures, here. Limit to under 750 words, and make every word count.
To learn more about DIPG advocacy, listen to the December 13 podcast of Childhood Cancer Talk Radio, Every Voice Matters: The Power of Initiative in Advocacy.