In 1993, when she was 5-years old, Alyssa A. was diagnosed with anaplastic ependymoma. She had surgery, radiation, and chemotherapy. As a result of conventional treatment, she had, according to her mother, no evidence of disease until January of 1997. She did, however, have slight facial paralysis damage to the pituitary gland from the treatment. The side effects of conventional treatment can be awful, make no mistake.
The tumor started growing again, and the family, according to a Riverside Press-Enterprise article from 15 February 1997, decided to forego a second surgery. By this time they had decided to go to Burzynski. According to the reporter, who was I’m sure trying to help:
Dr. Stanislaw Burzynski of Houston uses fluids that occur naturally in human blood and urine to treat cancer and the treatment reportedly has none of the side effects of chemotherapy.
By reportedly, they most likely mean, the family reported it. Burzynski’s own informed consent disclaimer (and the long record of testimony here) clearly demonstrates that the treatment can have awful side effects. According to Burzynski:
But other than that….totally safe? Not a chance. According to the same article:
Family and friends are helping [Alyssa’s family] raise the $16,000 for Alyssa’s treatment by holding a car wash and bake sale at the Harvest Christian Fellowship Church today. Right now Alyssa’s tumor is the size of a green pea. If it grows larger than 2 inches before the [they] raise the money, Alyssa will be excluded from the clinical trials, [her mother] said.
That $16,000 is likely the startup fee for the antineoplaston treatment at that time. In this article, they make no mention of the vast sums that Burzynski typically extracts from people who stay on his therapy for months. They raise $3000 in a few weeks, but then another appeal appears in the same paper of 22 Feb:
[Alyssa’s mom] said the therapy could cost as much as $40,000. The initial therapy, she said, costs $16,000 and followup treatments that cost $2,000 per month can run four months to one year, depending on the complexity of Alyssa’s case.
There is scant info about what happens when they go to Burzynski. What we know comes from 2 posts a cancer board hosted by MIT, after Alyssa was off treatment and had at least 2 tumors. On 23 July 1998, the Alyssa’s mother told another person looking into treatments:
Jessica, my name is […] and I have a daughter named Alyssa who has also been to the Burzynski Inst. for antineoplastons my daughter also had problems on the therapy. Alyssa had seizures and went into a coma for three days, but her tumor was shrinking in any event we discontinued that treatment.
How did this happen? We find out in a post from 1 Aug 1998:
I infused her with antineoplastons for ten months with good results. We still owe the man $98K, but after they pushed me to raise the dose of A10 to 200cc, she had seizures and we almost lost her. I did acquire [an] oral form [likely sodium phenylbutrate, which Burzynski also sells and which is the prodrug for ANP] from a patient that did not survive and she is on a safe dose. I have enough to get the job done this time. They are charging ancillary charges but not providing the care. I would not go to Houston again.
So, an overdose that may have put her into a coma for 3 days. Burzynski has historically had a problem not only with overdoses, but also with reporting them and preventing future ones from happening, at least according to the FDA, who during a recent site review found:
- Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
- The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] It seems that these overdoses are related to the protocol, which requires family members to administer the drugs via programmable pump on their own. Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.
Poor Alyssa may probably be counted among those patients whose overdose, in her case in 1997, should have triggered changes to the protocol to prevent other patients from “almost losing” their children. But he could not demonstrate that he ever did, and the human wastage piled up until 2013 as the FDA, inexplicably, watched. ONE patient overdose should have triggered these protections.
Not only that, but if the family actually thought that the treatment could “cost up to $40,000,” like they told the newspapers, how could they possibly have had informed consent of the costs?
Alyssa died on 1 March 1999.
What is baffling, however, is how Alyssa’s mom’s memory absolutely does not square with all the press coverage of her daughter’s case. In July of 2014, when the FDA waffled and allowed desperate patients–mostly children–to die on Burzynski’s drug, Alyssa’s mom appeared on facebook extolling the benefits of ANP:
Non-toxic? By her own account, Burzynski’s drugs nearly killed her daughter. And she does not seem to remember that, even though there were some bad side effects, due to conventional treatment Alyssa was lived for years with no evidence of disease until the relapse. This is simply another example of how anecdotes should not be used as evidence of efficacy. People make mistakes.
h/t to the research ninja
Sophie M. was 5-years old. Her parents took her to the doctor when her eye started blinking uncontrollably. Then she became unsteady and harder to understand. On August 23, following an MRI, the doctors at the Children’s Hospital of Orange County told her family that she had an inoperable brain stem tumor and said that she had months to live. (Sophie’s story was captured in the Orange County Register on 21 September 2000.)
Almost immediately, [the M. family] and members of the community began racing against time to raise money for a costly experimental treatment.
Before the [M family] left for Houston, where Dr. Stanislaw Burzynski administers the almost $15,000 per month gene therapy he says has saved hundreds of lives, 28 aunts and uncles gathered at the home of [Sophie’s father’s] brother-in-law to brainstorm fundraisers.
This was not Sophie’s large family’s first encounter with Burzynski. As reported in the 21 September 2000 Orange County Register:
“[Sophie’s father] says he is angry that insurance won’t pay for what he regards as his daughter’s last, best hope. After all, cousin Roman [M.] of Garden Grove, who first told [Sophie’s dad] about Burzynski, said the treatment reduced his 2-year-old daughter’s brain tumor by 85 percent.”
The daughter, Tori M., frequently asserts that she was cured of a brain stem glioma as an infant. Her family is among the most vocal of Burzynski’s supporters, however, there is reason to doubt her family’s conclusions.
If Burzynski says he has saved hundreds of lives, they do not appear on the Burzynski Patient Group, which has fewer patients on it than this website and has had 33 more years to gather names. His therapy is as much gene therapy as is drinking an Orange Whip.
As is so often the case, the entire family mobilized to pay the Burzynski bill, and this apparently large family had wide and deep connections in the community, as the list of contributors who immediately jumped on board to raise money for Burzynski’s worthless treatment illustrates: the family’s parish, the Chamber of Commerce, the local Family Support Center, and so on. The director of the FSC hit the nail on the head when she discussed what was going on:
Center Director Ann Nguyen said she understood the difficult choice the family faced when they decided to pursue an expensive, unproven treatment they could not yet afford. “It’s hard to be in the center of this and say what is right and what is wrong,” she said.
Agreed. One of the tragedies of the whole sordid career of Stanislaw Burzynski is that in times of desperation, it becomes more difficult to discern what is the appropriate course of action. However, with time and distance, as is clearly evidenced on this site in spades, patterns emerge that call for harsh judgement on the whole Burzynski enterprise.
By the time the story hits the local paper, the family is already in Houston for the 3-week training course that all ANP patients undergo:
Still, the family faces an enormous financial hurdle. For this first round of treatment, they owe Burzynski $12,000.
It is, of course, not covered by insurance. Nonetheless, the coverage in the local paper yielded a flood of money from the community, as reported a week later:
The parents of Sophie [M.] say response has been overwhelming to a Register story last week on their attempt to pay for an experimental treatment for their daughter’s brainstem tumor. Checks totaling $15,000 have been sent from all parts of Orange County.
Quack cancer cures don’t just victimize families, but entire communities. They also keep patients out of legitimate clinical trials, unnecessarily and unthinkably delaying the development of effective treatments.
In November there is more fundraising by the Chamber of Commerce. On March 1 we get an update in the Orange Country Register. The same author reports on a day at a local elementary school where they children are planting a tree for Sophie.
On Saturday students, teachers, parents, city officials and family members gathered to plant a star pine tree in honor of Sophie [M], a Stanton 5-year old currently undergoing experimental treatment for an inoperable brain tumor.
Though she has already outlived physicians’ expectations, Sophie is still very sick, and wasn’t able to watch as the tall tree with fluffy needles was lowered into the ground by four volunteers from Shade Tree Plantings, an Irvine based foundation that plants trees for charity.
Students at Carver said they learned about Sophie in their classes, and knew the significance of Saturday’s planting.
“We’re doing this so the family has money,” said fourth grader Shyla [W], gesturing toward the bake sale she was helping run.
The statement that Sophie has “outlived physicians’ expectations” is inaccurate and gives Burzynski’s treatment more credit than it deserves. In the first article, the reporter said that:
At best, she had 10 months to live.
Two weeks later, when Sophie’s death is announced and the enduring impact of Sophie’s struggle was documented, we are told:
Before she passed away Wednesday after a seven-month battle with an inoperable brain tumor, she united the city of Stanton by spurring an outpouring of support and hope. (emphasis added)
Sadly, this type of upbeat inflation of cancer patients’ prognosis and progress is typical in the media. And it’s hard to announce or even accept that someone is dying. See the spectacularly inaccurate case of Amelia S., for instance, where what appeared in the press and what was actually happening differed greatly.
Poor Sophie M. passed away on 14 March 2001, well within the time of her initial prognosis.
As of this writing, Burzynski and a number of his staff members are up in front of the Texas Medical Board on a fairly impressive array of charges. Let’s hope that the TMB can end this ongoing, endless abomination.
Dec. 18 2003, was 5-year old James W. of Lake Arrowhead, CA’s third day of headaches and vomiting. His story was captured by the Mountain News & Crestline Courier-News. His parents took James to the doctor, but he sent them to the hospital for a CAT scan. By the end of the month, he would have two surgeries for a Grade 2 astrocytoma. It’s a bad diagnosis.
James underwent normal therapy, chemo and surgery, for this tumor. By September 2004, the family had run out of options. They decided to head to Stanislaw Burzynski’s clinic in Houston. Their decisions and treatment were recorded in great detail in an online journal. On Sept 27, James’s mom writes:
okay, big news: we are leaving for houston, texas early tomorrow morning. we will be going to the Burzynski Treatment Center for cancer. he’s controversial, not all in the medical community like him, but we’ve heard very good reports from patients.
This is not entirely accurate. I have yet to encounter a physician who would knowingly send a patient to that clinic. It is telling that Burzynski’s patients are mentioned here, as they have often been the principle recruiters for Burzynski. They fanatically support him. This is to be feared.
James and his family flies down to Texas on seats that were purchased by a friend. On the 28th, they are there. A family member updates the blog:
[James’s mom] just called to say that they went into the clinic to drop off James’s medical records.
She described the scene like this:
“As you walk into a large reception area you see several secretaries at a desk. Above them is a large crucifix, and behind that is a large picture of (Dr.Burzynski)the doctor who founded the clinic with the Pope!”
There is also a picture in the reception area of the Pope at his recent visit to Lourdes. You may remember that the Pope was given James’s name to pray for at Lourdes.
As you know, [James’s parents] are devout Catholics. This “Catholic connection” uplifted her spirit.
Burzynski’s connection to the Pope is tenuous at best, but he milks it for all it’s worth. Earlier this year, when John Paul was beatified, Burzynski ended up on local news talking about, well, himself:
The piece, which seems to have been written by someone completely credulous (I would not be the least bit surprised if it was fed to the station by Burzynski’s own people), suggests that maybe, just maybe, he went to treat the Pope. This is, of course, a load of horse feathers. A photo proves nothing. Heck, my mom has a picture with John Paul II. She also cured him of imaginary cancer.
On Sept 29, we hear:
Today [Jim’s parents] met with two doctors from the Burzynski Treatment Center in Huston, TX.
After a full explanation of the treatment and a complete physical of James, they have decided to go ahead with it. No miracle cure is promised, and as she posted before, this is non-standard treatment. [James’s Dad] is looking into their Blue Cross Insurance to see if any part of this treatment is covered.
James will be treated with antineoplastons, a treatment only available at the Burzynski Treatment Center.
The routine is similar to chemo, James is infused and then progress is measured with scans.
[James’s family] plans to be in Huston for three weeks.
Of course it won’t be covered. It almost never is.
We see that the family is doing what so many other patients do, learning to administer the treatments themselves when they return to California:
James has a portable pump and [his mom] is being trained to administer all medications. Specifically flushing the porta-cath and handling IV equipment. She has emergency contact numbers and is becoming even more knowledgeable about medical treatment.
After three weeks she will be fully trained to take care of all medical needs. She takes James to the clinic every day and tests are done to monitor his condition.
On the 4th, more detail is given:
James feels really good. This is NOT chemotherapy. He is NOT in the hospital. We take him to the Burzynski Research Institute each day. We are there for about 3-4 hours getting trained on how to give James his treatments. He started this treatment on Thurs, Sept 30. A pump is constantly hooked up to his porta-cath and he receives the treatments every 4 hours. Each treatment lasts about a half hour. The treatment he gets is called antineoplastons. Really there are 2 different meds involved- one is to stop the part of the tumor that makes it grow, and the other is to kill the tumor. The side effects of these meds are minimal (especially compared to chemo!!). It creates an electrolyte imbalance, in that the sodium goes up and the potassium goes down. So, we have to have him on a very low sodium diet, and a high potassium diet (James is loving bananas!!) Also, to keep his sodium in check he has to drink ALOT of water. (I don’t have to mention that Burzynski’s patients have to pee ALOT!) Yesterday we got him to drink over 2 liters, and it made his sodium level go down today- so it worked like we wanted! If his sodium is even 1 point higher than 147 (the top end of “normal”), the FDA says that the patient cannot receive the treatment until it comes down. We REALLY don’t want him to have to miss treatments, so are on “sodium alert.”
To be clear, antineoplastons are chemotherapy by any measure. The list of side effects is gargantuan:
Hypernatremia, elevated sodium, is the most frequently reported side effect on this website, I think. And the prodigious amount of fluid that patients end up drinking because of the insatiable thirst decreases their quality of life. They are up running to the bathroom constantly and sleep deprived. Sometimes the sodium levels can get out of control. For instance, take the case of Luna P., who was rushed to the hospital with a sodium level of 178. This is how her doctor reacted to that news:
Make no mistake. Antineoplastons are dangerous on a good day. Further, leaving the patients to fend for themselves may have contributed to the over 100 overdoses that the FDA reported had taken place (only in the files they happened to review, mind you) with no evidence that any corrective action was taken on the part of Burzynski. These lapses are not in dispute. Josia C. died with a sodium level that is basically unseen outside of Burzynski’s trials. Nobody told Josia’s parents that, though.
On Oct 7, we hear that James is having very bad headaches, for which he is giving decadron, a steroid, to reduce swelling:
These doses are given i.v. by [James’s mom]. Part of the training that she is getting at the clinic includes giving this “emergency dose” when/if James gets headaches, so we are assuming that this is just part of what happens under this treatment. Who knows, maybe the pain is from tumor breakdown??!! The doc did say that if they continue, they could decide to send him to the hospital, which has special rooms set up just for Burzynski’s patients.
[His mom] will talk with the doctor tomorrow about the headaches. For tonight, the doctor said to hold the antineoplastons until tomorrow when they can look into the headaches.
What’s disturbing here is the suggestion that the pain is from “tumor breakdown.” This is a trope that is as loud as any in the stories of Burzynski patients and, by god, someone ought to investigate it. Here’s how it is put the next day, right before James’s pulse drops and he goes to Texas Children’s:
We figure that with everything that is going on, especially the headaches, something is going on in his head. Who knows, it could be tumor breakdown, which is accompanied by swelling, which causes headaches, which requires steroids to reduce swelling- so much for my extensive medical training!
This is something that many patients have reported. Take Rory Z’s parents, who reported:
I am now an old pro at giving the Decadron…it’s amazing how things can change in 24 hours. I gave Rory his dose this evening…he started to eat dinner and w/in about 30 minutes he threw up again. Darn. Perhaps we have to wait longer until he eats? I talked to [Nurse] Marlene tonight before the Group Meeting…and she said vomiting isn’t that uncommon at first…they may increase the Decadron tomorrow. She explained that as the Antineoplastons turn off the cancer cells..they die…and the white blood cells rush to the area to clear out the dead cells. This causes swelling…which can cause the vomiting She said, unpleasant as it can be..it’s actually a good thing.
Or you could look at Levi G’s story, another child with a brain tumor, whose parents reported:
The next day we talked to the doctors at the clinic in Houston and found some answers. According to them the tumor was breaking down. When it breaks down it causes swelling which causes pressure. We had to up the decadron (steroids) a little to keep the swelling down so that he could tolerate a higher dose of the treatment. They told us before this that he would get worse before he got better. But at this rate I wonder if he’ll ever get to the “better” part.
And this “getting worse is getting better” narrative is EVERYWHERE in the Burzynski patient stories. It’s a nightmare that we have found it as often as we have.
As James’s grandparent is writing this post, we hear:
[James’s Mom] just called me to say that the nurse said to call 911 and have them take him to Texas Children’s Hospital because he still has the headaches, his pulse is pretty low (about 60, it is usually 90-100) and he’s pretty sleepy (eventhough it is nighttime). Mare said that it may be a blockage of the shunt, thereby creating head pressure. We have seen in the past that when he gets head pressure, his pulse goes down, he gets sleepy and he has headaches. Anyway, I’m sure they do a c.t. scan.
The next day we hear how the visit to the ER went:
They went to the hospital, got a c.t. scan (which showed no enlargement of the ventricles, i.e. the shunts are working fine), got a dose of mannatol (which is supposed to reduce swelling- mare said she didn’t think it did much), and got an increased dose of decadron (steroid). The decadron seemed to help, in fact Mare said that now he is sitting up, drawing pictures, writing his name, talking, and drinking. Mare was in contact with Burzynski’s doctors the whole time, and she told the Texas Children’s Hospital doctors the whole story. They said, “wow, you guys have been through a lot.”
That’s not all that Texas Children’s Hospital doctors have to say about Burzynski’s patients. According to Jeanine Graf, director of the pediatric intensive care unit at Texas Children’s said, “I’ve never seen one survive long-term.” According to an interview with Dr, Graf that appeared last year in USA Today:
After caring for some of the Burzynski patients, Graf said she wouldn’t recommend his clinic to anyone. Although Burzynski’s patients can’t always be cured, she says, they do have choices.
“The most valuable commodity that a person with a terminal illness has is time,” Graf says. “You want to make sure that when you’re investing time in any therapy, that you are going to get a return on your very valuable last investment.”
Even Burzynski’s supporters, like Luna P’s mother, reported that Texas Children’s Hospital staff were always “cleaning up Burzynski’s messes.” As reported to the BBC investigative show, Panorama (reviewed by Orac at Respectful Insolence):
Luna was brought to the Texas Children’s Hospital during her time in Houston, and the staff there recognized right away that she was a Burzynski patient because they had seen so many similar patients suffering the same complications before. It was also clear how much contempt the staff there had for the Burzynski Clinic. If there’s one thing Panorama did right in this report, it’s showing how seeing so many already dying children show up in our ICU because of hypernatremia due to antineoplaston therapy will do that. Perhaps the most devastating part of this segment was seeing Dr. Graf stating, point blank, that she’s never seen a Burzynski patient survive. [emphasis added]
The next day, James is admitted formally into the ICU at Children’s, according to his mom:
James was admitted and is in ICU. The doc from Burzunski’s clinic said we are at a very critical stage. the tumor has swelled up and is bleeding. he had an mri yesterday which showed that it doesn’t seem to be bleeding anymore than it was the night before with the cat scan. we are very touch and go right now. every hour is critical. james may pull through this if his body can stop the bleeding itself, or he may not. he is on the highest dose of decadron that adults get. he does not have any more headaches except occasionally and they go away. we now understand how necrosis can cause problems just like the tumor.
I wonder about the necrosis statement. In fact on the 15th, James’s mom describes this whole episode leading to James’s admission into the hospital as an “intratumoral bleed.” His mom reports that the doctor (whose affiliation is not mentioned, so we don’t know if it is one of Burzynski’s people or someone from TCH) said:
the doc said that the bleed could have possibly helped if it was destroyed then part of the tumor could be dying since it no longer has that blood supply. i’m hoping the low grade fever is a sign of white blood cells cleaning up dead tumor
So a bleed inside the tumor with possible necrosis. We have seen innumerable patients who talk about necrosis in the center of tumors as if they were a positive development instead of the more likely scenario, that the tumor has outgrown its blood supply.
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- The Clinic gave the same prognosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- We saw it again in the case of Samantha T.
- We saw it again in the story of Christy M.
- A similar story came from Georgia State Senator Ed G.’s story.
- Burzynski himself tells the family of Chase S. the same thing. Poor Chase ended lying in state in his family’s front room for months.
On the 15th, James is still touch and go, it seems. His breathing is labored (possibly because of the steroids) and he seems to not be able to get much rest because if it. On the 22nd, James’s grandpa writes that the boy is too sick to travel home from Houston, as was planned. And on the 23rd:
James was admitted earlier today to a nearby hospital and later transferred to Texas Children’s Hospital. His symptoms are headache, vomiting, non-responsiveness, and incoherence. He had at least one seizure.
[James’s mom] called and said that the doctors do not think his present condition is related to the tumor but rather to a low sodium level. They are adjusting his medication to try to keep his sodium level where it should be. You may recall that the medicine from the clinic causes highsodium levels cured only with large intakes of water.
Over the next two days doctors bring James’s sodium up in the ICU.
On Oct 31, after a clot in the chest port and low white cell count, the family returns to California. On Nov 3, however, it’s off to the hospital in an ambulance again, as James’s sodium is off and he’s having symptoms similar to the ones in Houston. The staff at the hospital, Loma Linda, is very accommodating and takes over the administration of the antineoplastons. They are hoping this move will “minimize trips to the hospital.” Further they put in a g-tube:
that will allow fluids directly into his GI tract will be done. It may be tomorrow. That’s what all the testing was about. If they can successfully do this, it will allow large amounts of fluids directly into his digestive system to counter high sodium levels, a side effect of the antineoplastons (from Huston clinic).
As his grandfather puts it on the 8th:
The medicine he takes to defeat the tumor (6 doses a day) contains 12 GRAMS of sodium as well as other chemicals. The only cure for high sodium is ingesting extremely large quantities of water. It is difficult to get a six year old to force himself to drink so much water.
The costs are mounting and the family opens a fund for James on the 17th. On the 19th they are at home again, and we quote James’s mom at some length:
we are trying to get settled in, setting up all our pumps and equipment. the home health nurse who came to help last night said that we are basically running an ICU unit. she said it’s the same level of care and responsibility and we believe it! we practically have a whole pharmacy on our dining room table.
last night was ok until 2 am when james’ steroids kicked in and he stayed up until morning asking for food. so,
we opened up the kitchen and got to work!
so much has happened since texas, i’ll never have time to tell it all. on the outside, james seems worse than before. all the hard work he did over the past year, re-learning to walk and use his right arm, disappeared overnight when he had the intratumoral bleed. he is now weaker than ever on the right side. his left side is also weak simply from being in a hospital bed so much. his left eye is also weak, but seems to be getting stronger. however, we’ve noticed subtle improvements in his personality, interest in the outside world, and vocabulary. these improvements come and go. with this kind of treatment, you have to “get worse” before you get better.
It’s hard to write this and not seem like you are attacking the family, but it is crucial to illustrate how someone can rationalize staying on a treatment that is not working. First, you see basically contradictory assertions: James’s condition is deteriorating and he is getting better, but even those less objective improvements are flickering. The merciless trap that so many patients of the Burzynski Clinic fall into is summarized in the last line: You have to get worse before you get better.
James is getting worse. He does not get better.
His sodium is up again on the 20th and he’s off treatment. Then he crashes hard after going for a walk with his family. His heart rate is down. They think this might be because his sodium is too low and so they feed him. After getting 2 feet of snow on the morning of Nov 22nd, the fire department comes to the house twice to collect James’s daily blood sample and then to take him to the hospital when his platelets are at 36,000, what the family calls “a major medical emergency” (usually they would transfuse a patient at 70,000). He is at risk of bleeding out. At this time James’s father reveals how much this decline is costing in an appeal for help, as the insurance company (of course) is not going to pay for Burzynski’s treatment:
Now, I am humbly asking for donations to help us pay for this treatment. Each month, it costs $7,600 for James to be in the clinical study at the Burzynski Clinic. If the cancer is responding to the medication, James could be on the treatment for up to a year and a half- or even longer! We pray that this will be the case (of course, we continue to pray for the instant, miraculous healing of James as well!). We will find out if the tumor is responding by the MRI’s that he will get every 2 months. So, this is very costly, and we need to once again ask all of you, our wonderful support network, to help us.
The family moves in to Ronald McDonald House facilities because:
the docs at loma linda really want us to stay nearby. we agree.
By this point, James has already had about a dozen transfusions. On the 28th his sodium tanks. His father writes:
Loma Linda Hospital has been EXTREMELY cooperative in letting us do these trial meds with their help. It is cool because I can see that they are really interested and they want to know all the details of James’ history and of what this treatment is all about. Hopefully in the future, many more kids will be able to benefit from the medication from the Burzynski Clinic.
We have not seen James benefit from them. He has been living in a hospital a huge percentage of the time since he went to Houston. And the family asks for money again the next day. They are able to bring him to Ronald McDonald House with them. He seems to not be producing platelets, white cells or red cells.
On the 9th of December, the long awaited MRI takes place, though the fluid on James’s lungs makes them decide to not sedate him for the 2.5 hour procedure, and he gets through like a champ. Says his mom:
the doc from burzynski’s clinic said that we are going to hold off on the antineoplastons for a “few days” to see if his blood counts start to go back up. it’s not supposed to suppress bone marrow, but with james nothing ever seems to happen the way it’s “supposed to.”
tomorrow he will go back over to the hospital for 2 transfusions: packed red cells and platelets.
we are glad this day is over, i was worried about him being sedated with that cough. i’m trying not to obsess about the scan, but it’s very difficult.
On the tenth, no word on the scan:
we still don’t know too much about the scan results…the main problem is that they wanted to compare it to the one we had during the tumor bleed in texas, but nobody could find that scan!
Hm. A CD of the scan has been sent to Houston. In the meantime, they are trying to determine if James has pneumonia. The steroids he’s been on have suppressed his immune system and he might not be showing the typical symptoms, like fever.
Finally on the 14th, the results from Loma Linda:
“Except for a .5 cm (1/4 inch)growth into the hypothalamus, the tumor has not changed since the Texas/bleed MRI. The bleed is smaller and there is less edema(swelling.)” !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This is what Dr. Fae relayed to me over the phone today. We are very happy because from August 9th to Sept 21st, while on chemo, it grew over 100%.Basically, it seems as though the antineoplastons have put the brakes on this tumor even though we were never at our maximum dose and we had many interruptions in treatment.
we have not heard from Bursynki’s docs yet. as soon as we do, we will let y’all know!
This means it’s growing. A tumor growing explosively like it was before they went to Houston levels off as a matter of course. The size of the tumors follows something called a Gompertzian growth curve, which looks something like this curve (for another cancer):
So, it’s probably a bad idea to lean too hard on a second data point and conclude that the tumor’s progression has been altered by the antineoplaston treatment. And let’s say that the tumor has actually stopped progressing–how do we know that it is the ANP that is doing it, not any of the dozens and dozens of other treatments and procedures that James is undergoing? No, at best one must conclude it is too early to say.
On the 18th, the 1-year anniversary of James’s first symptoms:
Although the doctors at Loma Linda said that the last mri showed no change except for the quarter inch growth toward the hypothalimus, the doctors in Houston say that there has been “about a 15% increase in enhancement.” (enhancement means blood flow and activity) They said what this means is that the lower grade aspects of the tumor are being stopped, while the higher grade aspects seem to be “enhancing.” […]
Anyway, we are deciding to not dwell on the “enhancement” issue. All we can do is to continue to take care of him on a hourly basis (minute by minute really). Worry really doesn’t help. So much is involved in taking care of him that there really isn’t time to go down that road, although we find ourselves in very distinct moods, depending on how he’s doing. We get all excited when he is just able to open both eyes (which he practiced today, but was very difficult).
This does not seem to be a boy getting better.
On the 21st, the mom notices that James hadn’t had a sneeze or yawning reflex for a while (those reflexes originate in the brain stem), and how he has them. Granting that this is true (and not, say, confirmation bias), James is able to squeeze his dad’s hand on command and they even took him home for a bit. He feels good on this day, and the way she describes it is telling:
i even checked the pump that infuses the medicine into him, because i started thinking it wasn’t working right…he was feeling so good.
Antineoplastons can degrade the quality of life for the terminally ill.
He is still receiving infusions, and his sodium is too high for them to keep infusing him. On the 26th, after James was unable to stay awake for opening Christmas presents. We now see that his steroid doses have been enormous:
[The doctor in California, James’s mother] and I agree that this is most likely due to the weaning process with the steroids. We had gotten down to 2mg, 1mg, 1mg over 24 hours. Back a month or so, he was on 8mg, 8mg, 8mg, 8mg over 24 hours, so he was getting 32mg/day!! (an extremely large dose even for a huge adult!!) Anyway, we all decided to get him back up to 2,2,2 and see what happens.
On the 29th, James is still lethargic and he has had a poor appetite, and they think that the tumor is bleeding again. He is getting 4 liters of water a day through his tube. This may be leading to low sodium the next day, when they take him back to the hospital, where they find:
he was still very lethargic, could hardly hold his head up, and his right pupil was fixed and dilated, not responding at all to the flashlight.
The pump, it turns out, was broken, not pumping the high sodium ANP into James, and while he was still getting what are typically dangerous doses of water. The Burzynski Clinic sends a new pump. On the 30th, mom’s description suggests James is very poorly:
after this morning of eating popcorn and perking up a bit, he went to sleep and has been asleep, or just laying there with his eyes closed. he is not talking or even answering our questions. i know he hears and understands us because he will squeeze my hand when i tell him too, but he just won’t talk or open his eyes…although sometimes i catch him with one eye open a tiny slit but then he closes it when i see him. the nurse from houston said he may be sleepy for a couple of days because of the pump malfunction, etc.
On New Year’s Eve, the only update is:
james has a very large bleed happening now. doctors are very concerned. urgent prayer and fasting needed
The next day he manages some extremity-wiggling on command and swallow a few bites of food. The doctors are trying to “dry James out,” as his parents put it, and his heart rate picks up, but he’s not usually there.
Sadly, the poor kid seems to be really slipping away (some of the reactions seem like he’s in a vegetative state). To get a sense of where he is, on the 6th we receive a report:
Today, Mare and I got some good (and much needed) encouragement! We sat James up like we did the yesterday and the day before with the physical therapist. James was able to hold his head up for about 35 seconds several times! While he was doing this, his right eye was slightly open and he seemed much more alert than he has in the previous 5 days. Of course, we made a huge deal and told him how proud we are of him that he is working so hard. Also, at one point, I asked him to hit a ball that Mare held in front of him. He didn’t do it, so I did it hand over hand with him. Then I asked him is he could hit the ball, and he actually shook his head “no.” That was very encouraging because he really responded to me, which he hasn’t done much lately.
That seems an ambiguous response at best. On the 7th, acidosis is setting in, a condition that can be fatal very rapidly, but it reverses and he levels out. On the thirteenth, the father reports that James says, “What?!” in response to a question. The staff is manually moving food out of his stomach using a syringe in the g-tube.
On the 25th, James is still “asleep.” It’s clearly not sleep at this point. By the 31st, the doctors say that James has pneumonia. On February 3, James’s dad reports:
James’ breathing is extremely labored. He is now on a special type of mask that has a very large amount of humidified oxygen going. He is breathing through his mouth, his nose is inflamed, clogged (with blood), congested. We have been cleaning it out with saline and some non-invasive suction. Still he is breathing through his mouth and having a very difficult time.
They have been staying at a Ronald McDonald House by the hospital since November, and on the 4th, the manager tells them that they need to move out by the 11th. On Feb 9, however, someone at his bedside reports that James is acidotic, his breathing is failing. He dies an hour and a half later. He was 6 years old. Burzynski’s treatment seems to have done nothing but make the boy miserable while he was conscious.
It’s a disheartening story. We have a thousand names, a thousand stories. We are working on them, one by one.*