For the fourth year, the RI House has passed the “Neil Fachon Terminally Ill Patients Right to Try Act.” This bill goes a step beyond the Federal Right to Try law, by allowing terminally ill patients the right to continue using experimental drugs in a hospital setting, and to continue using experimental drugs from clinical trials that have otherwise ended or been canceled, even though the patient may have been receiving benefit from the drug. The bill includes a waiver of liabilities for doctors and hospitals. You can find the bill, 2022-H 7393, on the State House website and read the House press release issued on 3/15/22 for context.
This bill is important to sustain the hope of terminally ill patients who wish to pursue what they believe is their best treatment option. This legislation is important to us, because our son, Neil Fachon, diagnosed with DIPG, was one such patient.
Each time the “Neil Fachon Terminally Ill Patients Right to Try Act” has come up in the RI House, the bipartisan bill has passed with unanimous approval. Each time the RI Senate has allowed the bill to languish and die with little or no debate. The bill has never reached the Senate floor. The will of the House has been summarily ignored. This has to change. The full Senate should engage with this bill and debate the merits on the open floor.
In preparation for Neil’s return home from the hospital, we had rented a hospital bed and positioned it to face a freshly-cut Christmas tree. We had to establish new home routines, since Neil was now bedridden. We had converted the rest of the dining room into a private hospital ward. We stocked the dining room shelves with towels and hospital supplies and stowed bulkier items under the bed – a carton of feeding formula, disposable bed pads, a package of Depends and a giant bag of mouth swabs.
Dr. B. had given us a plan for gradually resuming Neil’s therapy infusions, and there was a tangle of tubes and bags to organize and manage. Dean set up a pole behind the bed for hanging ANP bags and the Liquid Hope feeding formula bag, along with their associated tubing and pumps. Liquid Hope is not a product provided by hospitals. It is a special formula made with real whole food ingredients. Unlike standard hospital formula, it is a plant-based organic product, that is corn-free, soy-free and GMO-free. Before ordering it from the manufacturer ourselves, we had to demonstrate to the hospital nutritionist that it was nutritionally complete and met their dietary guidelines.
Syringes, spring water, a suction pump and hand sanitizer sat on the table next to Neil’s bed. In between ANP cycles and Liquid Hope meals, we used a syringe to provide Neil with water through the percutaneous endoscopic gastrostomy (PEG), a flexible feeding tube that had been surgically placed into Neil’s stomach before we left the hospital. We ground up his pills and dissolved them in small amounts of water, which we pulled into the syringe, measuring and delivering the fluids through the PEG. We used the suction device, with its tube and attachments, to keep Neil’s throat clear of phlegm. It was a noisy machine, yet it worked as needed. Dean handled suctioning during the day. Evie and I took turns during the night, while sleeping vigil on a living room couch.
Maintaining the proper amount of water was a challenging trial and error process. Since Neil was no longer able to self-regulate his water intake, we had to try our best to regulate it for him. In mid-December Neil was again at Death’s doorstep, because his potassium had dipped dangerously low and his sodium had risen alarmingly high. As we were updosing the ANPs, the blood test results that informed us of this were delayed, delivered over three days after the blood had been drawn. We relied on a phlebotomist to perform daily home draws and next day results to properly monitor Neil’s blood levels.
Dr. Burzynski provided us with a prescription for a liquid potassium supplement. The only liquid potassium supplements available at the pharmacy were formulated with added sweeteners and colored orange with chemical dyes, ingredients known to promote cancer. This product was the only option available.
We kept detailed records of all the fluid going in – ANP infusions, Liquid Hope, potassium and water – and all the fluid going out. An indwelling Foley catheter steadily filled the urine bag hanging off the end of the bed frame and every time we emptied the bag we recorded the amount. We also tracked vital information with a pulse oximeter, a device that clips onto the finger and monitors blood oxygen saturation and pulse.
The visiting nurse in charge of Neil’s case, Gail from South County Hospital Health, was a dear friend dedicated to his care. Neil had grown up playing soccer with Gail’s son, Trey. Gail coordinated a wonderful team of home care specialists for Neil. Erin, the physical therapist had been helping Neil with balance and strength since September. Now she focused on maintaining the range of motion and circulation in his legs, and she showed me how to massage his feet and legs and manually rotate the joints of his ankles, knees and hips. Donna, Neil’s occupational therapist, had been helping with hand and arm coordination. Julia, a speech therapist, helped troubleshoot swallowing issues. Pam, the home health aide, came three days a week to spend an hour assisting Gail or us with Neil’s personal hygiene and bed sheet changes. And Jaymi, the alternate nurse filled in when Gail was unavailable.
Transporting Neil to MGH for neurological assessments was far too complicated, so we recruited a close friend, Dr. Achina Stein, DO, DFAPA, ABIHM, IFMCP, and her associate Sally Davidson, RN, MS, ANP-BC, IFMCP onto the team, as alternate sub-investigators. They graciously agreed to doing house calls and neurological assessments. Urologist Drew Tompkins was another valuable member of home care our team. We were truly blessed with the best home care support one could expect given the circumstances. This compassionate team of nurses, practitioners, aides and doctors took us under their wings and taught us an unbelievable amount in a relatively short span of time.
When not coordinating practitioner visits, I was moving constantly back and forth between the kitchen and the dining room – checking on Neil, monitoring apparatus and managing water, food, supplements and medicine. Moving in a clumsy hurry one day, I managed to pinch my left thumb as the door swung shut. The bruise that grew from the base of the thumbnail took the shape of a tiny wrench squeezing a tiny heart and producing a teeny drop of blood. My body seemed to be expressing outwardly the heart-wrenching feeling I was suppressing deep down within.
Neil could no longer walk nor dance nor sing nor talk. He could no longer eat nor drink nor grin nor laugh out loud. Yet, his heart was strong, his mind was sharp, and his eyes could speak. He was entirely present, he still had his sense of humor, and together we all called upon the Jester’s positive spirit to lift us up through the holiday season:
Whenever I feel like crying,
I smile hard instead!
I turn my smile upside down
and stand it on its head!
The rhyme is from The Jester Has Lost His Jingle, an uplifting children’s book by David Saltzman. Purchases support the Jester & Pharley Phund, which donates copies of the book and jester dolls to hospitalized children. The imaginary jester was Neil’s constant companion.
This post is an excerpt from Neil’s DIPG story, a work-in-progress. To put this chapter into context, this all happened in December 2016. Indomitable in spirit, Neil had survived six months beyond his three-month prognosis. I write this to raise awareness about the realities of pediatric brain cancer and to share what went on behind our family’s doors. While these words describe our experience at this stage in the progression of this disease, another family’s telling will differ greatly. I am interested in those stories, because they may hold valuable gems of information. The telling is always hard, and the memories difficult to revisit. For me, the writing process is strangely therapeutic, bringing with it a release of emotions.
I welcome editorial comments and reader reactions to this draft.
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.
Neil’s young voice was one of many to speak out about DIPG Awareness and Childhood Cancer in general. This week a few more voices are striving to be heard in Washington, D.C. Three days ago, the DIPG advocacy group issued a press release. The header expresses a sense of urgency – A Moonshot for Kids: DIPG Awareness Resolution H.Res.69 Runs out of Time as Childhood Cancer Advocates Return to Capitol Hill. It continues:
“Since the DIPG Awareness Resolution was first introduced in January of 2016, roughly 1200 more children have died of the deadly brain cancer while the bill has had no attention from House Leadership despite growing support nationwide. The DIPG Advocacy Group returns to fight for this bill which boldly confronts the lack of human values in the medical research industry.”
It concludes with the strong voice of a mother, Janet Demeter, who lost her child, Jack, age 4, to DIPG:
“…it [DIPG] exemplifies in a powerful way the marginalization of childhood cancers and lack of funding for research. Every child’s life deserves hope, but there is none for these children with DIPG. The first iteration of this bill we used to call, ‘Moonshot for Kids.’ Most experts familiar with the disease agree that, if they could find the cure to this one, they might just find the cure to brain cancer. I know they can if science put a man on the moon 50 years ago.”
To put this into perspective, according to the American Society of Clinical Oncology (ASCO), while about 3,560 children will be diagnosed with a brain or central nervous system (CNS) tumor this year, it is estimated that 16,830 adults (9,490 men and 7,340 women) will die from primary cancerous brain and CNS tumors. DIPG, one of the deadliest pediatric diseases with a dismal less-than-1% survival rate, has an average age of incidence between 5 and 9 years old. Diagnosed at age 19, Neil was even more of an outlier. He sat on the cusp of childhood and adulthood, just old enough to make his own bold decisions regarding treatment and to clearly articulate the experience of the disease. When DIPG robbed him of his ability to speak and to write about the experience, he spoke to us with his eyes, and this we documented with a few telling photographs.
Stories show far more than statistics, and the sea of voices telling the stories intend to create a big wave. I can imagine Neil’s spirit, riding the crest with a whole bunch of younger souls, all destined to create a sea of change. That is the objective of my writing and sharing his story.