Taylor M. was 2 1/2-years old on January 11, 2002 when he was diagnosed with a glioma wrapped around his brain stem. He was weak on his left side, mute, and right his eye was crossed. The prognosis for this cancer is almost (but not quite) uniformly dismal, as we have seen several times on this website. The doctors at several different hospitals could offer nothing more than about half a year. This is, of course, an imprecise science. Really, survival times from diagnosis are tracked along a bell curve, and physicians’ interpretation is not set in stone, but rather a likely extrapolation of the current situation based on their past experiences. Long term there is very little variation in the outcomes, however. He was slated for chemo and radiotherapy.
According to an article in the Daily News which appeared on 21 April of that year:
Hope came in January, the day before Taylor was to begin chemotherapy, when a friend phoned with stories of success at the Burzynski Clinic. Taylor’s parents researched Burzynski and liked what they found – stories of children who went on to lead happy lives after their tumors shrunk.
Of course that’s mostly what you find–stories. This case offers a sad irony about how reliable the stories you find on the Internet are.
We don’t see what is happening to Taylor in high resolution, but in February 2002 he went to the clinic, like thousands of other families have. He had a shunt planted in his chest for the antineoplastons, the name of the chemotherapy that Burzynski was peddling at the time. But we hear on a post on a message board:
When we got to Texas to see DR. B our Doctor of 13 years said he can’t sign to watch over Taylor’s Blood work if he’s going to be on the treatment. Well, I wasn’t too scared God has shown us the way so far so I called my insurance comp to find a new Doctor and they told me about 15 names I just called one he is the head of pediatric oncology at Stony Brook University and he said, Yes that he’ll take Taylor as a patent and that he would sign the papers we needed to have sign so we can come home with the treatment for Taylor.
According the Daily News article, the treatment was costing Taylor’s family $10,000/month. (His dad told the reporter he’d be willing to sell his house to pay Burzynski’s fees.) He was on treatment for 3 years.
What precisely happened during those three years is unclear. In April, according to the doctor overseeing Taylor’s treatment in New York, the tumor had not changed since it was detected, and some of the pressure in Taylor’s head has been relieved, but the doctor says it could be due to the steroids that he is on.
In February 2005, on the message board, Taylor’s father makes a bold proclamation:
In that same post, Taylor’s dad made a bold proclamation:
I just got some GREAT news my wife was watching a couple of kids for one of [Taylor’s doctor’s] nurse and she came over to pick them up tonight. She told us that DR Parker is now giving Patent DR B’s treatment as one of there choices. This is big. He sees how great Taylor is doing and that his Cancer is NO MORE that God and DR. B of course. I will be on the news very soon. There is a lady for Entertainment Tonight that is [in] love with Taylor. She did the first news report 3 years ago when my company did a fund raiser and she now is going to do a new story about Taylor And Dr B. We’re going to fly to Texas and we’re going to get DR B’s treatment out and show them how well Taylor is doing. [emphasis added]
On Taylor’s page at the Burzynski Patient Group, his dad conveys the same information:
Taylor is cancer FREE and doing great thank God and DR B.
We contacted the doctor who was overseeing Taylor’s treatment, Dr. Robert Parker, to see if the treatment was or ever had been offered as a treatment in his department. We received the following reply:
The quote is only partially accurate. I did in fact tell parents, when asked, that one of our patients was being treated at the Burzynski clinic, that he was “stable”, and that we were obtaining requested lab monitoring studies at SB and forwarding them to the Burzynski clinic. I made no recommendations one way or the other regarding the therapy but did tell parents that it was ‘controversial” as there was never any published verification of the results claimed by Dr. Burzynski. We did not endorse the treatment and were not administering the therapy at [Stony Brook], but merely helping those families that chose to pursue this line of treatment by providing some degree of laboratory and medical monitoring.
We get a more accurate picture of what was going on with the tumor on June 16, when Taylor’s dad returns to the message board:
Hi everyone. Taylor has always been doing so well so I never put anything bad on here. Well, we need your prayers for our little Taylor. Taylor had a MRI last week and for the first time in three years the scan showed that Taylor’s tumor had grown 16% and I’m very scared it never change before it never decreased or increase and his been doing so well we don’t understand. I’ve been getting about 4 to 5 calls a month for parents of other children that want to bring there kids to DR B’s and I’ve been telling them that my son is Cancer Free and now this what do I tell these people now when they call me?? I’m so sick don’t know what’s going to happen I can’t lose this battle after all these years of him doing so good. [emphasis added.]
It appears that the claim that the cancer was gone was, understandably, the father’s fondest hope, perhaps his preferred outcome, and I have no doubt that in some way he really believed it. And how many people did he recommend the Clinic to based on that rather too optimistic interpretation? Maybe a hundred, at that rate? This is an object lesson in why patient testimonials are no substitute for hard data about efficacy. Most likely, the tumor was slow growing and the ANP did nothing. The steroids controlled the intracranial pressure (which may have been caused by the massive sodium load Taylor was carrying while on treatment).
I wonder if Taylor has been transferred off the ANP at this time and is on phenylbutyrate, the prodrug of antineoplastons, which Burzynski also sells at his in-house pharmacy. At least it sort of sounds like it as on 28 June we hear:
Thanks were going to increase his pills to 40 pills a day and just waiting for 4-5 weeks to do new MRI. God will bless him I know it.
On July 14, we hear what the Burzynski Clinic prescribes. More of what’s not working:
Taylor is doing OK he can’t talk too well or walk too well but DR b said that he can stay on pills he now is up to 60 pills a day poor little guy hates taking them we make a liquid. Thanks for your prayers very much needed right now.
A few days later, on the 19th:
DR’s in Texas are going to put him on IV and steroids and he’s not doing so well may God Bless him and all our little children bye for now.
Back on the IV, Taylor deteriorates even more, as we hear on Aug 23:
I need help Taylor is doing very poorly and I don’t know what to do he can’t walk or talk and I’m very scared that this is the last stage and he’s going to die on me and I can’t do anything else to help him he gets up at less 8 time at night to pee and drink but he cries the whole time he’s doing so. I don’t what to do I need some guidance PLEASE I don’t know what is next he was walking but he was dragging his left leg badly and yesterday he fell and now his right leg is just as bad as his left leg was and his right arm is not working if anyone can talk to me I don’t know what to do I’m losing this battle and don’t know how to handle it.
On the 29th, we hear that his right eye is now crossing. The next day, the local doctors are recommending radiation. ANP has failed. The father refuses and Burzynski agrees, which is incomprehensible given the trajectory that Taylor has been on. By September 24, Taylor can no longer sit up unassisted, hold his head up, talk, or move anything but his left arm and hand. He is still on Burzynski’s treatment.
On October 11, we hear the results of the most recent MRI, and the situation is dire:
It’s not good at all. His tumor had grown 50% in 5 weeks and they’re taking him off the treatment and we have to start radiation and chemo soon.
Usually, this is where the story would end. As far as I can tell, the antineoplastons did nothing to shrink the tumor at all. There is no reason to think that Taylor’s long survival was anything more than the type of outlier that you’d expect. But there is an interesting twist at the end that answers a question that I had wondered about. In January, after a number of surgeries for Taylor, his father says he’s waiting for Taylor to be released from the hospital so they can go to Mexico for treatment–apparently this radiation is the end of the road in the States. Other Burzynski patients and alt med patients chime in, warning Taylor’s dad about Mexico. They are clearly tuned into the presence and warning signs of quackery in Tijuana, which are as far as I can tell indistinguishable from those in Houston. Self-deception is extremely powerful.
Taylor died at 7:00AM on 18 May 2006. As of this writing, his “success” story is still hosted on the Burzynski Patient Group website, over 7 years after he died. The clinical trial that Taylor was in and his parents paid for over the course of several years remains unpublished.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski, who demands his money up front for obvious reasons.