*An appeal to help get Congress to take action follows this story*
Maryn was diagnosed with DIPG after her smile became somehow strange and drooping and after she told her mother that her eye was “dying.” She also started to lose coordination. The diagnosis was of course terrible, as it is in a place on the brain stem that makes surgery basically impossible. [It should be noted that the details of this story come largely from the blog her mother kept and turned into an ebook, which is available for purchase as Maryn’s Hope.]
Maryn’s mother, Annette, is raising her three kids on her own, and the sudden disease means she will have to quit school. Her earliest questions to the doctors display an awareness of both traditional medicine (nutrition) and pseudo-medicine (homeopathy). In fact, I see that she consulted with the now-notorious-on-this-site Indian homeopath Prasanta Banerji, who I had never heard of before, but sure seem to have cornered the market on peddling unfathomably dilute concentrations of water to the parents of children with brain tumors. My next site is about this charlatan. The family, buoyed by his claims, are looking into “Ruta-6.” All options, understandably, are open at this point because the prognosis is about a year.
The family consults with…everyone. St. Jude’s. Radiation oncologists. Researchers working on vaccine trials. Everyone. By the 25th of June they start radiation.
In a post titled, “Desperation,” Maryn’s mother devotes a few sentences to Burynski:
“In doing research last week, I found the Burzynski Clinic in Texas. The clinic claims to be able to save children with Pontine Glioma by using antineoplastons. It sounded hopeful at first and I was encouraged to learn more, However, after reading stories on the Internet about parents who took their children to the clinic, the prognosis did not change and the children passed anyway.”
In early, July, however, the family is seriously considering going to Burzynski. The mother is anticipating a $60,000 bill. Her account of first contact with the clinic screams with warning signs. 1) They are charging patients to be in a trial–thereby accepting none of the risks that a drug developer usually accepts (of course they’ve been “developing” this treatment for over 35 years, so don’t pretend like they are likely to actually market it widely). 2) They charge up front. She is also told that “once a patient is released to go home, monthly drugs, supplies and case management costs about $7,600 per month.” She is encouraged by the stories that she has heard from other parents. You need to understand that the people who think they have been helped by Burzynski are far louder than those he has not, for obvious reasons.
Maryn was featured in the Salt Lake Tribune on July 30.
Fundraising for Burzynski is clearly in full swing:
Within two weeks her campaign was off the ground, and [Maryn’s mother] is optimistic about raising $60,000 before Maryn’s October appointment in Houston. She’s depending on it to afford the $20,000 down payment, housing in Houston, and an ongoing $7,500 monthly payment for medication.
On August 26th, Annette announces that a fundraising concert raised $12,219.55 for Burzynski. A few weeks later, the MRI shows that radiation has shrunk the tumor some 75%. She is committed to alternative therapies, which are taking a toll on her. “Raising money for these alternative therapies will help relieve a huge amount of stress in my life, and make it so that I won’t need to look for a job working in the middle of the night to climb out of the hole I am digging to save Maryn’s life,” she says.
In November, as the tumor has started coming back already, it seems like the tumor is an aggressive Grade 4.
She has a difficult discussion with her doctor after the MRI:
“We talked about the Burzynski Clinic and possible side effects. He said he has seen patients come back with extremely high levels of sodium.”
Sadly, the conversation leaves Annette “without one shred of hope in my entire being.” This is where Burzynski’s patients are–at their most vulnerable. This is why they need to be protected from exploitation.
Annette goes on:
“Before we came in for the MRI, I had decided that if the tumor had grown at all then we would leave for Houston (Burzynski Clinic) within the week.”
She is not so sure anymore, though a few days later she decides to go to Burzynski “sooner rather than later.”
On November 9, a very interesting, albeit inadvertent commentary on what the medical profession thinks of Burzynski:
Well we’ve hit a snag in the process. Primary Children’s Hospital said they could put in Maryn’s line when we got ready to go to Houston for treatment, now says that they cannot put in her line. I was prepared for this. In talking to other parents who have chosen to use Burzynski Clinic, they said that they have had difficulty getting lines put in for their children once the doctors found out they were going to Burzynski”
In fact, local medical staff refuse to participate, but she eventually persuades the doctors to put the line in. (I wonder if it was at this point because the cath was inevitable, so they might minimize stress to the little girl by doing it locally.) It is clear that her physicians are trying to protect the family, but Annette sees it as “fighting with the medical establishment.” They are in an unfathomably awful place, and I feel horrible for them. She says something telling:
“Like I said, until you have walked in my shoes, please don’t judge. Even if you think Burzynski is a ‘scam’, why would you share such negativity with me? I am walking through the darkest hour of my life and I need hope.”
Patients need and deserve honesty so they can make the best decision. Nonetheless, the family looks like they have been getting nasty comments from the public, which is unwarranted in any case.
Annette goes through the entire process of having the trials explained and a first consult. After the long day:
“Finally, Dr. Burzynski himself showed up and reiterated what the previous doctor had said. However, he added that Maryn needed to have an MRI and PET scan before we could begin treatment. That is not what I [was] told over the phone, so I was unhappy, to say the least.”
This is a recurring pattern, getting slammed with huge, unexpected costs when you get down there. And she gets the run-around trying to get these tests in. Welcome to the Burzynski Clinic.
On Nov 24th, treatment begins. Very soon, the side effects of Burzynski’s ANP chemotherapy appear. Maryn is sleeping a lot and she is going to the potty many times in the night. Patients often report that this is a major problem and that the kids who are on this treatment are constantly tired because of it. The amount of water that they need to drink to not lapse into comas is astounding. The sleepiness during the day, however, is surprising and I wonder if she has swelling around the tumor? They go to the doctor on Thanksgiving and they decide she needs Decadron, so that seems like it is a possibility.
But Maryn’s head is still floppy and she can’t wake up. They wait overnight to go into the clinic. “I was still in shock at how quickly her condition had changed from good to bad,” she reports. Maryn is vomiting constantly. Constantly. You should really read this for yourself, honestly. So much it looks like they try to move in closer to the clinic because she can’t make the long drives.
Maryn’s speech is slurred and she has lost 3 pounds to vomiting. She has a line break and all sorts of endless aggravating problems that require emergency room visits while in Houston. They delay their return home for a few days because of an infection that puts Maryn in the hospital.
We hear very little until March 1, when there is another line break. We hear that she is in the bathroom “20 times a day at least.” On the 8th she has an MRI. The MRI shows very little growth. Her May MRI shows no change.
On the 23rd of July, the Burzynski Clinic tells the family that Maryn has had a “complete response” following another MRI. She should only have to be on the ANP for a few more months.
In early September, the tumor is growing again. The poor mother seems to be blaming herself because out of exhaustion she suspended treatments. Of course there is no reason to blame her. In November, it’s clear the tumor is growing again, as the little girl had been having some of the same symptoms that she had been having before, and the MRI in November confirms it. It’s about as big as it was before radiation, and the doctor says that without radiation, they can expect maybe 4 months. She is still on antineoplastons, though the tumor has grown, we learn, 40%
Maryn is a real outlier, and it is absolutely wonderful that she seems to have gone for more than 18 months without bad neurological symptoms. This is what published clinical trials, which Burzynski never seems to get around to doing, would demonstrate, whether or not it was the antineoplastons, the raw foods, or just the nature of this particular tumor that gave the family such a reprieve.
On Christmas Eve, Maryn is taken off ANP. Her mother makes a statement about the course they have taken:
“When I had Maryn on treatment at the right dose, the most aggressive portion of her tumor disappeared and her case was reported to the FDA as having a ‘complete response.’ When I began to suffer exhaustion in September and was inconsistent with her treatment and dosages that is when her tumor began to come back.”
This angers me. 1) I’ve seen how well the Burzynski Clinic interprets MRIs. Ask Evan W, or Justin B, or Georgia M, or Cody G, or Leslie S, or Chase S. 2) Maryn’s mother has done nothing–nothing–wrong. She stretched everything to the absolute limit on behalf of her daughter, and it comes through in the blog with crystal clarity.
Maryn passed away at the end of January 2011.
As always, I encourage you to read the patients’ own accounts. I see nothing here to suggest that the ANP did much of anything. The Clinic’s statement that Maryn had a ‘complete response’ is also open to interpretation because it clearly does not meet the requirements mentioned by Peter Eisenberg following his review of the Burzynski Clinic:
*A complete response means the complete disappearance of the lesions, and no appearance of new lesions. A partial response refers to shrinkage by more than 50% of the sums of the products of the longest dimension of a tumor and the longest dimension that is at right angles to it. Responses must be documented to persist for more than four weeks.
*I am surprised to see in the FDA summary that half of the 36 patients characterized by Dr. Burzynski as responders withdrew from the study due to patient request, worsening conditions, or growth of tumor. If antineoplastons work, why are these people choosing to stop therapy?
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.