On March 18th, 2011, Zoe L. was diagnosed with an atypical teratoid/rhabdoid tumor (AT/RT) at Cork University Hospital, after she had seemed lethargic and unbalanced and her head started tilting to one side. As her mother described the early days to the The Corkman:
“Zoe was the bubbliest girl you could possibly meet. She was a real live wire and loved playing with us and Leo. She was beginning to move around on her own and would stand up with the support of the couch,” [her mother] Orlaith told The Corkman.
“Then we began noticing subtle changes in her behaviour. She was unable to stand up by the couch; her head began tilting to one side and she was getting weaker as the weeks went by. Her character changed as well. She was a lot quieter and was permanently sucking her thumb as if it was a comforter to her,” she added.
You get a sense of the closeness of this young family (which had suddenly doubled in size when the twins Zoe and Leo were born) through a touching video made early in the treatment, and let’s face it, photogenic babies are cute:
Zoe was a beautiful little girl, as you can see from her photos, and she underwent surgery at Temple Streets Children’s University Hospital in March 2011 to have as much of the tumor removed as possible. Chemotherapy for these tumors is dangerous. It’s working on developing brains and can have side effects that last a lifetime. It’s not a great hand to be dealt; it’s a true dilemma. Apparently hoping to avoid the harsh side effects of tested and known chemotherapies. The family planned on taking Zoe and her twin brother, Leo, to the United States for up to a year for Burzynski’s antineoplaston treatment). The initial cost was €100,000 ($131,000), with a projected cost for the year of €1,000,000 ($1,316,000), a pretty hefty sum for a treatment that is about as efficacious as scolding the tumor. (That final sum was revised downward to €700,000, which is also bonkers for an unpromising experimental treatment in a world where patients are not expected to pay for experimental treatments.)
For someone in the later stages of planning to go abroad for cancer treatment, the family is laboring under some misguided presumptions that one would think it would be the ethical responsibility of the Burzynski Clinic to correct. That is, if they were concerned about their patients’ well-being and informed consent: “We did some research into it and knew that Zoe had to receive her treatment her the States. The Texas clinic there is the only one in the world that does the particular type of treatment that Zoe needs. It is non-toxic and has had positive results,” she said.
This is demonstrably false, and my god I wish I could tell them that in a way that it could help them. ANP has significant side effects, especially spiking sodium levels, which is seen throughout most of the stories here. It is in fact predictably dangerous, and you would think that the side effects of high sodium levels would be especially worrisome on a child who had just had brain surgery. This apparently was also not in the brochure.
The family went to the States in July, where ANP treatment began, while back home fundraising continued, including a pretty epic cycling fundraiser by a cousin as well as a…shave and waxing event (a novel idea, very clever indeed–tragedy and earnestness can bring out such creativity). In the article about the race, there seems to be a misperception that the high cost of treatment at Burzynski’s Clinic was because “American healthcare is expensive,” which while generally true, is not necessarily the case at the Clinic. It is more likely, because the drug is a metabolic derivative of another medication for urea cycle disorders, that the high price is because Burzynski’s prescriptions are filled at his in-house pharmacy. In fact he claims to be the discoverer (of the fraction of urine, not the prodrug), developer, manufacturer, prescriber and provider of what his supporters push as a magic bullet for cancer. This. Never. Happens. Whenever someone says they have a monopoly on truth, run away. Science is a collaborative effort. No reputable scientist would refuse to share the results of his trials with the world, especially if he could cure cancer.
By the time of the race, the family had established the My Sister Zoe Appeal.
On July 28th, Zoe’s catheter was inserted, presumably into her chest like all the other Burzynski patients have had, so that the ANP can be administered fairly continuously. On the 29th, Zoe started treatment at the Burzynski Clinic, according to a facebook update.
Realizing that the costs of staying in the US for the entirety of treatment might be prohibitive, the family seems to have made plans to relocate to Belgium if Zoe’s condition allowed. It did. On September 10th the family returned to Europe, relocating to Brussels: Great news!!! We are coming back to Europe tomorrow!!!! After a long time spent in Houston and some difficult times, we are finally back thanks to everyone involved in the fund raising for our precious baby girl!! Thanks to all of you, ye are great people!!!!
The intervening time between April and September had been pretty much a parade of fundraising activities, bringing together a community behind this precious girl and adoring family, including fashion shows, sporting events, bike rides, and music concerts. It is truly remarkable how communities can band together so powerfully for someone. It is this generosity, however, that Burzynski’s business model depends upon.
Very few details about the treatment she underwent with Burzynski are available, which is just as well. I only share what has already been shared with the world. I am baffled, however, by the statement that “Zoe responded well to [Burzynski’s] treatment.” It is of course hard to say that any single case, in the absence of clinical trials, is a case of a treatment working–you need to weed out the variables to see which is contributing to a cure. It is, however, quite clear when a treatment has not worked. You wonder if that was something that the Clinic told the family. Poor Amelia S’s family was told that a tumor dying on the inside was a good sign rather than a signal that the tumor had probably outgrown its blood supply. As have other families. For decades. Innumerable young families have crossed the door of the Burzynski Clinic over the previous three and a half decades. These may be the most desperate and vulnerable people there are, the ones who face the prospect of losing their child. It is our responsibility as concerned, sympathetic humans to protect the vulnerable. I have yet seen no evidence that Burzynski has mastered this basic trait of human sympathy.