Pete Cohen chats with Richard A. Jaffe, Esq.

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4/2012 – Pete Cohen chats with Rick Jaffe
(33:59) 11/9/2012
Richard A. Jaffe, Esq.
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How did you meet Dr. Burzynski?

A long time ago in 1988, um, he hired us to represent him in his Medical Board case, so, uh, started working for him then, and then there got to be more and more work, and, uh, at some point it was so much work, it was just easier for me to be down here
So I moved from New York to Texas, mostly just to, to represent him, and my wife was in the oil industry, so, it was a “no brainer” for her to move down here too

And how, were you intrigued by this whole case ?
I mean, did you work out straight away that this guy was genuine, and there was really something here ?

No (laugh)
How do you know, you know ?
At the time we represented, uh, a number of a alternative health practitioners around the country, and we heard a lot about Burzynski, but you don’t really know
I mean, um, um, there are a lot of stories out there
Every doctor seems to have a few patients, uh, that were helped
So initially, I mean, how do you know ?
His operation was larger than most of any, uh, health practitioners, alternative health practitioners in the country, and, uh, seemed a lot more sophisticated, but, uh, it’s not really until you dig in the medical records of the patients that you really see what’s going on
I mean, that’s what you really need
I mean,
It’s not really even, it’s
’cause this whole thing about anecdotal evidence, that everyone has testimony
so every doctor
You know what I mean ?
anybody
Even charlatans have testimony
people
one or two people
or 3 or 4 that’ll come, and say w
they were cured, and maybe, maybe the patients really believe that to be the case, but, um, oftentimes there’s other explanations
Prior treatment, um, the nature of the disease
Sometimes it’s such that their natural, the natural history is not straight linear, um, but after looking at some of the medical records, I mean, you know, I think
it’s just,
uh, anybody would become a believer, and indeed, I mean, government, government doctors have come down here and looked at

some of the records, and they were convinced that, that the treatment was causing remissions in some brain cancer patients

So, I mean, obviously lawyers, I imagine many lawyers all over the world would often take on a case, when they know, possibly the guy isn’t telling the truth, but they can see there’s still a story, and they, they, they, they, uh, represent that person, but for you, I suppose
that when you realized that there really was a story here, did you kind of get, emotionally caught up in this whole thing and think: “Right, th this guy’s got a cure for cancer, and I I need to bring this to, bring him to just, not bring him to justice, but, clear his name
Well, I think with Burzynski, more so than any client I’ve ever represented
He represents a unique constellation of medical services
He’s the only guy in the world doing what he’s doing with antineoplastons and now with this treatment, so, it’s really different
Uh, you know, with Burzynski, most of the patients, are in bad shape
They’re either dying, uh, they, or they have a disease for which there is no known cure, you know, like a lot of these brain tumors
So, even from the beginning, what’s different is their are many, many patients back then who were on the treatment, that uh, that felt that without this treatment they were going to die, and so that, that’s much different, than the average, any kind of lawsuit
Right ?
So th th these lawsuits, the Burzynski cases back then and now, uh, these cases matter, in a, in a deeper, and fundamental, and personal way than most anything, well I think that any lawyer does
I mean, any criminal defense lawyer, who defends an individual, is defending that person’s, uh, liberty
Alright ?
Versus incarceration
But here it, it wasn’t so much, or, it wasn’t exclusively about Burzynski, it was really about all these other patients, and they certainly believe they needed him, and, uh, uh, many of them, obviously did
So, so that, that, that’s a whole ‘nother dimension, which typically we lawyers don’t get involved in
So, I mean, it’s a responsibility but also a great privilege to be working on these kinds of cases

You’ve been representing him for how long ?

For a long time
Since 1988, continuously

And can you believe this is still going on ?

Well, you know, uh, it’s, you know, it’s, it’s just ongoing
I mean, until there’s a cure for cancer, for all cancer, either done by acknowledged

or, uh, uh, to be Burzynski’s cure or somebody else’s
I mean, this is ongoing
And I guess the problem is, you know, ultimately, there’s nobody yet
Not even Burzynski has the cure for every cancer or
even every stage, or even ev, every, ev, ev, every person that had cancer
So, because it’s such a tough battle, and because, it doesn’t work on everyone
So you have these open questions
Ah, so, so,
Yeah, I mean, I guess, I, I can’t believe he’s still messing around with these clinical trials
I mean, I think that if the drug didn’t have his name attached to it, it’d probably would have been approved by now
So, and I think, so that, that’s unfortunate, I think, that when you fight the FDA, and even if you win, you know, the F, the repercussions, you know, you know I, you know I
Hopefully the drug will be approved, sometime in the future, but, but who knows ?

So, um, why do you think, why was it, I mean, obviously I came over here as you know, for this case, which is now not going ahead at the moment
Why, why, why is that ?
Wha, what has the judge, said ?

Well, of course, you have to (under)stand, this case involves a different type of treatment
It doesn’t involve antineoplastons,the drug Dr. Burzynski invented, and your friend is receiving, and it involves a new approach to cancer, which is sort of like personalized medicine, where they take a bunch of FDA approved drugs, that have shown some promise, on a particular cancer, but are not, uh, approved for that indication, and based on these early clinical trials showing promising results for genetic testing they give these combinations of FDA approved drugs, off-label to patients, and that’s really what the, this case is about, and, uh, you know I think, I don’t think they, they never had a case
I mean, they never had a case
The, the main allegation, in each, of the 2 patients involved, is that they used this treatment, which wasn’t sufficiently tested, and was non-therapeutic, and whatnot, and we had a, what I would call a dry run
We presented the evidence to the Board, or 2 members of the Board, in both of these cases
In each, in each case, the Board members felt that the treatment, was within the standard of care, given the advanced condition of the patient, or one patient, and given how rare the other patient’s tumor was
So, we had our dry run in each case, and the Board found in our favor on the main charge
They had some technical issues with medical records or whatnot, and, uh, the Board basically said, they took the position, ok, agree to some kind of sanction on these little charges, or, or we’re going to go after you on everything
So, we refused the honor, and, uh, the Board then charged him with the same thing that they already cleared him with, or on, and, and so we had to do, you know, basically the same case again, and, uh, the irony in, is in these 2 cases Burzynski wasn’t even in the country
He was, he was, he was away for, uh, in both, for both cases, when the patientscame
So, uh, the question is how do you hold someone responsible
Even if you own the clinic, for treatment administered and prescribed, by other doctors, and that concept of vicarious liability does not, uh, exist in jurisprudence, and in the law governing professional re, responsibility, anywhere in this country
So, the Board’strying to start that
You know, I think they just got in over their heads, they
Most people just knuckle under
You know, most people don’t, are afraid to go to court, so they’ll sign anything just to, you know, not to go forward, but, you know, Burzynski faced serious stuff
I mean, he set, faced, 5, 10, 15 years in jail
So he wasn’t going to be intimidated, by the Medical Board, and he refused to give in
So when I told the Board at the time, and I told them all along, they have no case, and o on the merits they have no case
We already won, and they have no case now, and, and slowly I think, the Board is starting to understand that

And what sort of a person would you say Dr. Burzynski is ?

Well I think he’s a complicated person
I mean, I think, uh, uh, you know, he, I think like a lot of mavericks; I represent a lot of mavericks around the, uh, uh, country
One of the main characteristics of these guys, is that they have absolute and total certainty, in what they believe in, in what they do, um, and no doubt
Uh, they all think they’re right
They all think that history is going to vindicate them
Now, I’ve represented some people where I personally doubt (laugh) that, uh, uh, that belief, but not in Dr. Burzynski’s case
I mean, I think he’s all, he’s definitely helping people
He’s definitely, uh, uh, uh, making, extending people’s lives, and curing some people that otherwise would have died, and so I think he, and so I think he happens to be right
So, uh, you know, so, but, but he’s a human
He’s got a big ego
He thinks he’s, uh, he thinks he has made an important, contribute to medicine, and he’s not shy about sharing that sentiment
So, uh, I think, and I think that he’s, uh, not American
So he comes with a completely different mentality towards, say, the government
Alright, he grew up in communist Poland, where everyone, where everyone, has to work around, the government, and I think that’s much harder here, and, you know, I think he has expectations that, that he would have a lot more freedom, than it turned out he had, too, and he thought he would not have to deal with the kind of government, uh, rigamarole that you have to deal with in communist, Poland

And, and how do you think it might all pan out for him ?
I mean, I know you don’t have a crystal ball, but if you could look, 5 or 10 years down into the future, and, do you think that he will have got somewhere, to be accepted in the medical (?) of oncology ?

Well, I certainly hope so
I mean, 5, 10 years from now
I mean, I think, at a minimum, what’s going to happen, there will be many, many patients who will be alive, and continue to be alive because of him
Some, will have their lives extended
Some will be cured
Some wi, won’t be cured, and will die
So, I think that’s for sure, going to happen
You know, is there going to be an end to, uh, all this ?
We had a period of maybe 10 years where there was very little action with the Board, but, uh, you know, it’s hard, frankly, I mean, just in, and again my perspective, like I’m in a, like a, a sergeant in the trenches, in trench (laugh) warfare
So, it’s hard for me to see the big picture
I mean, I just keep fighting these battles, and there’s one, after another, after another
So this is really just the latest, and on there’s civil lawsuits, and then there are people on the Internet, and then, you know, there could be more Medical Board investigations
So, lo, look there are a lot of people who don’t like what he’s doing
They think what he’s doing is either unethical or wrong, or shouldn’t be giving drugs, these drugs to people, except under clinical trial conditions, and, you know, he has detractors, and he has a lot of supporters
I mean, uh, mostly amongst the patients he’s cured
So, I don’t know that, that, that is gonna resolve itself
I mean, ultimately, he’s one of the few people in the country, that, or maybe the only person in the country that does what he does, and, it’s not the way medicine is practiced, in this country, typically
Right, and, you know, I think what he does, is, is more, is more patient oriented, in a sense that, once you’ve been told you’re terminal, why should you just get the palliative care that a medical oncologist thinks, you know, they should be given
even though when, no one ever gets cured of chemotherapy, once it’s palliative, once you have stage 4, solid tumor

Mmm

I mean, they give chemotherapy for what they call palliative reasons, which means, not curative
So, this concept of giving, just conventional chemotherapy to make you feel better, extend your life 9 weeks, I mean, y, not everyone wants to do that
Some people want a shot for a real cure, and, you know, based on the evidence with antineoplastons
, I mean, he seems to be giving people that shot, and curing some of the people
So, you, you know, I don’t see how, this thing gets resolved
Up until the time that the
treatment, the
antineoplastons is approved by the FDA and, you know,
it’s, it’s hard to see a clear path, for that, for a lot of reasons, not the least of which is financial
I mean, it takes dozens of 10’s of millions of dollars

Mmm

or 10, 100’s of millions
So, I mean, someone has to finance the clinical trials
The drug companies aren’t interested right now
They’d just as soon, buy a drug that’s been fully tested
So, I mean, the drug company response has not been overwhelming, because, even though this phase 2 phase, have resolved, and, and, uh, they have excellent results, the drug companies want to wait and see
So, uh, it’s, it’s big money
I don’t think there’s any way in the world Dr. Burzynski, himself, can fund phase 3
I mean, he, he funded everything else now, but phase 3 are, is a much bigger stage involving dozens and 100’s of patients, and that’s just within the financial means of any individual

it seems like it’s unlikely that its going to happen right
I mean, even from the point of view of, what, with phase 3 trials, they’ll be with children

with brainstem gliomas, right
and the FDA’s saying they’ve got to have radiation

Yeah I, um,
I unfortunately, I haven’t been involved in that process
I just see the result, and I, I, I just don’t see how any parent agrees to that, you know

I don’t see how any parent agrees to it
I don’t see how clinical investigator, agrees to do it
Um, I don’t know
I got so, I got some questions of the FDA as to, why they forced him into this particular protocol
I mean, I don’t know
I don’t have any facts or evidence, but I, I, just doesn’t make any sense to me

what’s you’re about that ?

I don’t know
I mean, I, it just doesn’t seem to me, that it’s a, that it’s a fair clinical trial that

Mmm

either an investigator would find ethical, or a patient, or a family, would agree to have their patient treat, their, their kid treated under
I mean, it just doesn’t make any sense to me
I mean, it’s worse than
I mean, both phases, both phases, both arms of the study, you get radiation
It’s radiation alone versus radiation with his stuff
So, I mean, it just doesn’t make any sense to me, given, given the clinical, the phase 2 clinical trial results

So just a, so just a few things, like, you know I’m going to talk about big Pharma, and then talk about the FDA

Right

They talk about the many people as if they’re one person, but, you know, they’re obviously a collective group of individuals who work for an organization, right ?

Well, I mean, I think, the concern is, that the FDA now, by statute is, in no small part funded, by the pharmaceutical industry
It’s like “Pay as you go”
So the, the pharmaceutical ind, industry now, pays for, the processing of the clinical trials by the FDA
So, and then you have the whole concept of the revolving door
You have a lot of government officials going into the drink, uh, drug companies
So I think that’s another problem
So, I mean, you know, I think conspiracy is too strong of a word, m, but, you know, I will say, I don’t think the system’s set up, for an individual like Burzynski, to get a drug approved
I, I, I just don’t see
There’s no support for that
I mean, the days
I mean, it’s like, Einstein, you know ?
He sat in a patent office, and, and doodled, and had his little theory
He could never get his, stuff published today, you know ?
Where did he go to school
?
Where was he teaching, you know ?
So Burzynski has a lot of the same problems
They say he doesn’t publish, but, they won’t let him publish
So, uh, or they won’t let him publish , in, in the mainstream journals
So, I, I, I think though, I think the, I think the system, has a strong bias, against a guy with a discovery
So, that’s not quite saying, there’s a conspiracy, but it’s, it’s sort of along the same lines, and, you know, the conspiracy implies some kind of, um, intentionality on the part of one or two, or some small group or coterie of people, and I don’t know, I don’t think that’s really the case
I think what happens is, the institutions are such that, they allow certain things, and disallow certain things
Alright ?
I think that’s just
there’s no
I don’t think there’s any 2, 3, 4, or some, coterie of Rocka, they’re like a Rockefeller conspiracy
People are saying that there are 12 industrials
That they control the world
I mean, I don’t see that happening, but, the whole system is such that, you know, it’s, it’s
I guess what, uh
The, there’s a book by, uh, a, a, Thomas Kuhn, the Structure of Scientific Revolutions, and he talks about, normal science, and how science progresses, in terms of paradigm shifts
So, normal scientific medicine, works, uh, by big institutions doing, studies about combinations of drugs, after drug companies, invent mostly, modifications of existing drugs, and, less commonly, completely new drugs, and, uh, less commonly, different classes of drugs
So, you have a whole, you have a whole pipeline from a drug company, a whole, uh, uh, mechanism of testing, by the universities, funded by the pharmaceutical company, uh, all the pharmaceutical companies, and that, that just doesn’t lend itself, to one guy, sitting someplace in Houston, or wherever, and having a drug, put through that process
That just doesn’t happen
Burzynski is, so far as I can tell, the only person, to ever completed, a phase 2 trials on a drug he invented
I don’t think that’s ever happened, before, and I don’t think it’ll ever happen again

Ah, was it ’98, was it the chairman, uh

Kessler ?

Kessler
I saw, an interview he gave, press, a press conference where he was explaining about, being able to fast-track
The FDA trying to make it possible to fast-track, you know, drugs that have shown, you know, positive, rather than going through all of this sort of clinical trial, and there’s a guy in the, in the press conference who started asking questions about Burzynski

Right

and you could just see quite clearly he was very uncomfortable

Right

asking questions about, uh, about Dr. Burzynski
How do you think someone like him,
would view, someone like Dr. Burzynski ?

Not favorably
I think that, uh,

Do you think they must know ?
Do you think they must, even he, let’s just say, if he were on his own, he, he knows there’s something there
That he’s obviously got something

I,
I don’t know, uh
I think, that, the guys in conventional medicine, because Burzynski came from orthodox medicine
He was at Baylor
He was a researcher at Baylor
So, I think, they’re not going to Burzynski, is that, he didn’t go about it, the way, other physicians would have done it, other scientists would have done it
So normally what would happen, is, uh, uh, I mean, I think the critical, point in his story is that, when he was at Baylor, and his, uh, professor was supporting him, this Unger, left, you know, they had space for him
They wanted him to go in the Oncology, uh, Department, but, they wanted the patent, to his drug, and he wouldn’t do it
So, that would have been the more conventional approach
You give up the patent rights, you become part of the team, then some big institution, uh, uh, shepherds the drug through, and then they find some drug company support, who will split the patent with the university
So, had he done that, uh, you know, I think the drug woulda been approved by now, but, you know, it was his drug
He came to America with it, and he wasn’t going to give it all away
So, I mean, I just think that’s, you know, I mean and that’s, you know, I think he wasn’t expecting that kind of thing in America
Maybe in communist Poland, but not in America
So I think that really, you know, set him down the path of being a, a, an alternative health practitioner

And wha, wha, what was it like for you when, uh, winning, the case, in was it, 199, 3, 1998 ?

’97

1997

Well, you know, there wasn’t just one case
I mean, I mean, it was everyone
I mean, I analogize it to, like whack-a-mole, or whack-a-rat, you know
You have, like a rat come out of, of a hole, and you bang him, and one comes out of this hole, and all of a sudden you’ve got 2, and then 3, and, so, you know, during the early ’90’s, I mean, I mean, there were 3 grand juries, uh, we had the Medical Board action, which went to hearing in ’93
The Texas Department of Health sued him in ’92
Half a dozen insurance companies had sued, uh, uh, sued him for, for some, for Racketeering
Uh, Texas Air Quality Department went after him
I’m trying to think who else
So, all of this happened, over the course of 3, or 4, or 5 years, and it was just, continuous, and so, one agency would, would get active, and then, they get beaten down
Then somebody else would come, uh, come up, and surface, and indeed, I mean, you know, it, you know, some of them flat out said they were waiting to see what happened, with this oth, wha, what happened with this other agency, and they weren’t gonna do anything, and then when they got tired, they decided, that this new agency had to do something
So, I mean, that was flat out, what happened
So, yeah, I mean, it culminated in the criminal case, I suppose, but even there it was up and down
I mean, the judge ordered, uh, ordered, prohibited him from giving the treatment to anybody else, because the Texas Medical Board case, ultimately went against us, and then we had to go Congress, and Congress forced the FDA to put all his patients on clinical trials which made the Medical B, Board case moot, and then we won the criminal case
So, after we won the criminal case in, uh, ’97, things got quiet for a little bit
So that, that, that was good
I mean, it was quiet
I mean, relatively quiet, and then, uh, lately in the last couple years it’s been very active again

So the worst case scenario would have been
What would have been the worst case scenario ?

For when ?

And this, this
What could have happened this week if the case had gone ahead ?

Well, the worst case scenario would be, there would be a finding, that, that it’s a depart, it’s a departure from the standard of care to use, uh, off-label drugs, that haven’t been approved by the
FDA for an indicated use, and you can’t use the combination of the drugs until someone gives the stamp of approval saying that their safe and effective, which means, you know, you couldn’t, it couldn’t, you couldn’t give the treatment anymore to patients
So you have 100’s of patients that are on this multi-agent gene-targeted therapy, and ultimately that form of treatment is only available at the Burzynski Clinic
I mean, I don’t think that even clinical trials
Burzynski, depending on how you look at it, he’s a few years ahead of, of, uh, well, even the clinical trials
I mean, they’re some clinical trials now on different kinds of cancer where they’re doing 1, 2, or 3 agents
He’ll use 4 or 5, albeit, lesser dosages
So he’s treated 1,000’s of patients like that, but there’s no place else in the world where people can get, the treatment
So it’s kinda the same thing as back in the ’90’s
We have people on drugs, uh, which are unavailable, uh, and, only available through Burzynski
So, if he couldn’t give them, to people, then they wouldn’t get ’em, and, they’re terminal, and, they’re doing well
I mean, or they’re not going to do as well, or they’re going to die
So, it’s, I guess it, it’s sort of the same thing here, ah, uh, only, uh, the irony is all these drugs are, approved by the FDA, and most cancer patients get off-label, uh, drugs
Drugs off-label
So that’s, very common in cancer
It’s just that not common with the drug used on these patients, and in the combinations used

So, this finally
Whe, when you’ve, uh, won these cases, I mean, there must be, it must be good, right ?
It must be good feeling

I had a good feeling last week
I mean, I mean, you know, or I’ve been working non-stop, for months, every day
I mean, there’s no day off in this kind of stuff
It’s just constant
It’s just, his war
There’s always something to do, and then I’m a solo practitioner
So, when the judge cut the heart of the Board’s case out, I’ve been telling the Board, that they can’t, that they have no basis to, to, to bring charges against him, for several years, since 2010
, 2009, and they’re not listening, and, and, I was pretty sure that once you had a judge look at the case, they would, rule in our favor, you know, but the problem is the Board is, like a law unto themselves, and they think they can do anything, and, uh, they just changed the law, in September
So actually, the Board has no recourse
They, they used to be able to change findings of facts, and conclusions of law, but as of September, 2011, they can no longer do so
So, if the, judges’ ruling s, uh, stands, as I think they will, their only remedy is going to be to appeal to a State District Court, and they’re not used to that, because they, like exercising, uh, complete authority
So, they’re in a new position, and I’m sure this is the 1st case, that they’ve ever, not gotten what they want to, from, from a judge, administrative law judge, and not being able to correct it
So, I mean, that, this is a good ti, completely new experience for the Board, and I feel bad for them (both: laughing)

You, you, you do
As a Board they all sit down, and as a group of people, and talk about Dr. Burzynski, and, and, and work out how they’re gonna bring him down, and then ?

Well, that’s more the conspiracy
I, I, I, I think that, some of the Board members, may know of him
He, but, but, but like I say, he’s appeared in front of these informal settlement conferences, and basically, individually they, I mean, exonerate him, of, of the main charges, but I, I, I think that, you know, when we talk about the Board, the Board other than these a, acting informal settlement conferences, where you have one Board member, and one member of some district disciplinary review committee, we’re not really talking about the Board members, these doctors, and lay members of the Board, we’re talking about the Board staff, and that’s the lawyers and administrators of the Board, and I think, you know, I don’t know
I have some, uh, uh, they need to clean house
I mean, they’re getting some very, very bad legal advice, and I, I just think the legal advice at the top, is, is, is horrible, and, and they need to make some dramatic changes, and I think it would be better for the people of Texas if they, just did some house cleaning with the administrative staff there

And what do you think about the way that, uh, Dr. Burzynski’s been , what’s the word, in England, he’s got a very bad press there

(Alright ?)

and, um, why do you think that is ?

Uh, why, well, I mean, look
I mean, I think, people have opinions
They’re,
they have the right to express opinions
I mean, I think, uh, some of his agents did some things that I think, were not wise, in retrospect
I mean

Mhmm

Uh,

The stuff with the, this kid, this blogger

Yes

(?)

And I think that, uh
I think you have to be very careful, about what you tell people that are expressing opinions, and, you know, I mean, I, I, I think, you know, I think there’s a reason why, lawyers get involved in these cases, and should be involved, and I think what happens is, you know, I think there was a, you know, a well meaning, individual, who just went too far, and I think stirred things up unnecessarily so
You know, I mean, I think someone who had some legal training, acting on Burzynski’s behalf, might not have made some of the, you know, just faux pas that were made
So, I mean, that stirred, some things up, and I think

(?) stirred something up that was already there ?
You know, ’cause, I know, I’ve spoken to so many people in the U.K., and, uh, and you find very few people that have anything positive to say
In fact, a friend of mine who’s a famous doctor on television, when I was here, he was on British television with a little girl, and her father, who were trying to, uh, raise money to, um, come over here and, um, in fact, they couldn’t come anywhere, come, they couldn’t come anyway, because, the, uh, FDA said that this type of brain tumor, she couldn’t be treated anyway
But this doctor, who’s a friend of mine said, uh, Dr. Burzynski is, you know, he’s a medical pioneer
He’s, uh, uh, he said that and then literally, for 2 months, non-stop, I think especially on Twitter, they said that he never should have said this, and the guy is a quack, and he’s a, he’s a fraud, and

So your, your friend got in trouble for saying that he’s a pioneer ?

He didn’t get in trouble, but I mean he got a lot of bad press, for speaking on television with this child next to him, saying that, Dr. Burzynski was, you know, a pioneer, and pioneers often have a hard time, and

Right, right

And, you know, you look at Twitter, uh, you probably don’t
You could be (laugh) and you just see, it’s probably, probably the only, 30, hard, hard core people, who spend, all of their time, trying to

Yeah, I think that’s right
I think it’s a very small group, of people, that are making pretend it’s a big movement
I mean, we’ve looked, at some of the traffic
We’ve analyzed some of the traffic
I don’t even think it’s 30
I think it’s more like, 3, or 4, or 5, that are creating things, and then someone had some friend who’s an actor, who has, you know, 3 million followers, and all
So it’s really a very small group of people, but historically, medical doctors who have stood up for Burzynski, have had negative consequences
We had, someone from the National Cancer Institute, NIH testify, this Nick Patronas, and he got in a lot of trouble for doing that
So, you know, it’s not, it’s, unfortunately, you know, speaking up for Burzynski can have, uh, negative career consequences, or, or just some bad P.R., but that’s, part of being a pioneer
It doesn’t mean that, uh, Burz, I mean, if anything, I mean, it shows, it shows that’s like the medical mafia
Yeah
So, that’s what I call, the church of medical orthodoxy
So, that’s what I call
So

Well I, I think it’s gonna be so interesting when I get this film broadcasted, to see what kind of reaction we get
It, it’s just a story I felt I had to (?)

Where are, where are you going to try and get it ?

I’m going to try and get it
I know people at the BBC

Right

I’ve worked in television
So I’m going to try

Oh really, (?)

I’m gonna try those avenues, but you know what ?
Even if it doesn’t

You have cable
You have some kind of public access ?

Yeah
I’ve, I’ve worked in television for years
So I’ve, I have a very good stab at getting it out there, but if I don’t, I’ll get it broadcasted on the Internet

Oh sure
You do, do a YouTube or something, or do what Merola did as a documentary

(?)

That’s had an amazing impact

Yeah
He’s making a sequel
Eric was just over in England

Oh really ?

I looked after him when he came over

Yeah
He wanted to talk to some of the patients and doctors

Eric, I said, ah, you know, so, we’ll see
But listen, I really appreciate the opportunity to ah

Ok, no problem

really, to be able to talk to you
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http://www.richardjaffe.com
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Advertisement

The Biggest Loser: “The Skeptics™” Guy Chapman (guychapman @vGuyUK @SceptiGuy) http://www.chapmancentral.co.uk/blahg/ – September 28, 2013 “The Skeptics™” Burzynski discussion: By Bob Blaskiewicz – 2:19:51

[1] – September 28, 2013 “The Skeptics™” Burzynski discussion: By Bob Blaskiewicz – 2:19:51
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“CITE ONE EXAMPLE, of a SKEPTIC MAKING SHIT for a BURZYNSKI shill OR ANYONE ELSE in REAL LIFE”

“That’s a quote”

“That’s, that’s something coming in from, from GUY (CHAPMAN)“
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1:36:00

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2/18/2013 – 5:00pm – Anna Capunay to GUY CHAPMAN: You also should JUST LEAVE ME ALONE
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2/18/2013 – 5:04pm – Anna Capunay: #SKEPTICS LEAVE ME ALONE
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2/18/2013 – 5:21pm – Anna Capunay to GUY CHAPMAN: I’m going to politely ask that you STOP ATTACKING my mothers health
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2/18/2013 – 5:23pm – Anna Capunay to GUY CHAPMAN: Again, I will politely ask that you STOP ATTACKING my mothers health
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</a
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2/18/2013 – 5:31pm – Anna Capunay to GUY CHAPMAN: I’m going to politely ask you ONE MORE TIME to STOP ATTACKING my mothers life. THIS is NOW HARASSMENT
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2/18/2013 – 5:31pm – BurzynskiSaves to Anna Capunay and GUY CHAPMAN: @annacapunay appears to me (& all watching) this troll @SceptiGuy popped up to ATTACK after you announced good results of your mom
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2/18/2013 – 5:47pm – Anna Capunay to GUY CHAPMAN: I really don’t know how many times I have to ask you to please STOP the HARASSMENT
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2/21/2013 – 8:29pm – Anna Capunay to GUY CHAPMAN: I’d really appreciate if you’d STOP HARASSING ME and my choices. Please STOP HATING the fact that my mother is alive
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2/21/2013 – 8:31pm – Anna Capunay to GUY CHAPMAN: Please STOP HARASSING ME and please STOP HATING that my mother is alive
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2/21/2013 – 8:32pm – Anna Capunay to GUY CHAPMAN: HARASSMENT IS SERIOUS and I’d appreciate if you’d STOP TRYING to BULLY ME
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2/21/2013 – 8:55pm – Anna Capunay to GUY CHAPMAN: I think guy needs a girlfriend or something cause HARASSMENT is OUT OF CONTROL
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2/22/2013 – 5:06am – Anna Capunay to GUY CHAPMAN: Then do yourself a favor and STOP TWEETING ME. It’s as simple as that YOU MASOCHIST
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2/22/2013 – 8:10am – Anna Capunay retweeted to GUY CHAPMAN: #Burzynski isn’t making the claim here. It’s @annacapunay saying that mom’s life was saved. STOP HATING. AWFUL
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After reading the above Tweets, IT’S READILY APPARENT WHO HAS “DEMONSTRATED THAT HE’s STUCK in a WORLD of MASSIVE COGNITIVE DISSONANCE”
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We ALL KNOW WHO “HAS DUG HIMSELF INTO A DEEP HOLE”
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What do you NOT understand about THIS, High School Science Teacher ?
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[1] – September 28, 2013 “The Skeptics™” Burzynski discussion: By Bob Blaskiewicz – 2:19:51
======================================
DJT – Didymus Judas Thomas
——————————————————————
BB – Bob Blaskiewicz
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0:32:07
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DJT – And my other point is that, uhmmm, when these trials finish, as I’ve pointed out on my blog, M.D. Anderson finished a trial in 2006 and didn’t publish the results electronically until January of this year

So, just think

Burzynski’s 1st trial we know that finished in 2009

So we would still have more years to go before he caught up to M.D. Anderson as far as publishing

So for him to actually be trying to publish stuff now and The Lancet not publishing because they have other stuff to do, put in there, that’s understandable
——————————————————————
0:33:03
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1:44:00
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DJT – So I can say that since the Mayo Clinic (Correction: M.D. Anderson) finished their study in 2006, and it took them until 2013, to actually publish it, then I can say, well, Burzynski finished his in 2009, which was 3 years later, which would give Burzynski until 2016
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1:46:00
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2:11:02
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BB – “Why wasn’t that study”
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DJT – for me to make up my mind (laughing)
——————————————————————
BB – “Why wasn’t that, that that that, still . . again, it it doesn’t seem really to to approach the the the, main question here”

“You know, um . . what are the standards that you have that it isn’t, what are your standards to show that it isn’t efficacious ?”
——————————————————————
2:12:05
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DJT – Well I can say, well I’m going to have to wait, the same amount of time I had to wait for Mayo (Clarification: M.D. Anderson) to publish their study; which was from 2006 to 2013
——————————————————————
2:14:07
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BB – “So, if you’re unsure about this stuff, if you’re unsure about the the time to publication, why are you defending it so hard, other than saying, “I don’t know, I really need to””
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DJT – Why am I unsure ?
——————————————————————
BB – “Uh about the”
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DJT – (laughing) I just gave you an example
——————————————————————
BB – “The reasons, the reasons for which that he’s, no, why are you defending him so hard, when you’re unsure ?”
——————————————————————
DJT – Oh, who said I was unsure ?

I just gave you an example
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2:15:02
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When are YOU going to MAN UP ?
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Still waiting for you to name the “open forum”, you twit
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#EPIC SKEPTIC #FAIL
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[1] – September 28, 2013 “The Skeptics™” Burzynski discussion: By Bob Blaskiewicz – 2:19:51
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https://stanislawrajmundburzynski.wordpress.com/2013/10/04/september-28-2013-the-skeptics-burzynski-discussion-by-bob-blaskiewicz-21951/
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[2]
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http://www.chapmancentral.co.uk/blahg/
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What to do when a Burzynski Skeptic suggests you not do it

When I mentioned Ben and Laura Hymas to Bob Blaskiewicz during the Saturday Google+ Hangout, and suggested that I should compare it to the patient stories he “embellishes”, he suggested I review his patient stories instead

So what am I doing ?

I’m reviewing the patient story of Laura Hymas

However, my goal is to provide a perspective of her mood, health, treatment, and support network, so that readers can get an idea of what someone with cancer; who does not yet know that they have cancer, may be experiencing, so if they note similar experiences or symptoms in themselves or others, they will know that they most likely should seek professional medical assistance, and also be able to use it to compare to other “patient stories”

Laura Hymas: Kent, United Kingdom
Ben: fiancée
Jacob: son
——————————————————————
(I will be doing a little data clean-up)

Note how I do NOT “embellish” Laura’s story by adding extemporaneous commentary like Bob Blaskiewicz
——————————————————————
2005 – Laura met Ben: knew instantly wanted to start family with him []

When first met Laura 3 years ago beautiful, bright and energetic girl [2]

loyal, kind hearted and has a smile so infectious that it can light up any room [2]
——————————————————————
started planning to marry and grow family [2]
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======================================
MOOD
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1/2009 – Laura pregnant []

a) delighted to be having a baby but pregnancy wasn’t easy []

b) suffered terrible morning ­sickness so severe had to be admitted to hospital []
——————————————————————
4/2009 – morning ­sickness stopped at 16 weeks, from then on felt exhausted []
——————————————————————
9/2009 – Jacob born [] [2] []

9/2009 – []

a) felt like happiest woman in the world

b) began planning to marry and grow family

c) adored being a mum []

d) knew wasn’t depression because felt so happy being a mum []
——————————————————————
9/2009 – 12/2010 – []

a) felt never fully recovered after the birth and over 15 month period

b) certain wasn’t depressed

c) was so happy but exhausted all the time

d) convinced there was something wrong and so frustrating not knowing what

e) so tired even good nights sleep couldn’t get up in the morning to take care of Jacob when Ben went to work; stay in pajamas all day

f) at wits end

g) causing a lot of stress at home
——————————————————————
5/27/2010 – []

a) felt like luckiest woman alive []

b) son Jacob just celebrated 1st birthday and she and fiance Ben were busy ­planning wedding []
——————————————————————
10/2010 – frustrating as kept ­wondering if was imagining it [[
——————————————————————
12/24/2010 – []

a) no one ­expected anything serious so I just popped along with Jacob []

b) totally ­unprepared for what doctor said []

c) When doctors dropped their bombshell, just broke down []

d) happiness was shattered

e) thought of Jacob not having me here is heartbreaking []

f) will do anything to see him grow up and determined to beat this []

g) can’t accept going to die []

h) was in pieces []

i) immediately rang mum, Vanessa, who hurried to hospital to comfort her []

j) strange relief to know hadn’t imagined all symptoms, never expected ­something so terrible []

k) reassured when read stories saying people did live normal lives with this sort of ­tumour []

l) huge relief []
——————————————————————
12/2010

a) felt couldn’t accept there were no other options []

b) felt confident []

c) so angry but had no choice []
——————————————————————
2/2011 – []

a) Being unable to care for son made feel so depressed

b) felt like life was slipping away

c) No words can describe how much this news and period of time affected us as a family
——————————————————————
4/2011 – []

a) had devastating effect on her as young mum, and affected every part of lives because at moment cannot enjoy time and plan future like any other normal young family []

b) everyone was in for further shock []

c) left reeling when doctors said tumour had grown rapidly []

d) couldn’t believe it []
——————————————————————
5/27/2011 – confident will get there and beat this [9]
——————————————————————
6/2011

a) felt very confident, almost empowered []

b) Given situation felt had nothing to lose []

c) astounded by generosity and kindness of general public []
——————————————————————
LAURAS TUMOUR [1]
——————————————————————
news hit very hard and also devastated her family and friends [1]

Until something like this happens, you dont realise how much of an effect it has [1]

fun loving girl who’s taken to motherhood like a duck to water, son is so lucky to have her because she always puts him first [1]

illness crept up slowly and was affecting long before diagnosis because it was eating away at health and energy which was so frustrating for when wanted to be energetic mum doing loads of things with Jacob [1]

awful diagnosis had positive and negative effect, fact now knows what was wrong is huge relief because knew deep down something was wrong, but its awful news at same time [1]
——————————————————————
6/27/2011 – Anyone who has been or is going through a life threatening illness will understand power of positivity and support network of friends and family [15]
——————————————————————
faces race against time to travel to US for treatment she hopes will save her life []
——————————————————————
7/8/2011 – [18]

helped stay positive and strong as a family even in difficult times [18]

worried how long it would take before could start treatment [18]

has been so strong and positive throughout journey, im so proud of her for being such an amazing fiancee and an amazing mum to Jacob – not a day goes by where she doesnt make us smile and keep our home life normal for Jacob at this important time in our little mans life…a really special person [18]
——————————————————————
7/28/2011 – had agonising wait for results on Thursday
——————————————————————
8/3/2011 – [21]

MIXTURE OF FEELINGS THIS MORNING [21]

never happy with just sitting around [21]

spent months researching all kinds of brain tumour treatment protocols looking for most successful, non harmful type of treatment currently available in the world and even speaking to past patients about their experiences, led us to front door of controversial Dr. Burzynski’s clinic in Houston this morning…somewhere that gives us all a bit of Hope [21]

Driving to clinic we were nervous about how today would be but as soon as we walked through the door we were met with friendly faces and felt instantly at ease [21]

left clinic feeling relaxed, like were in right place and the day had gone great, been prescribed treatment she wanted and with any luck will be having 1st dose this Friday [21]
——————————————————————
8/8/2011 – [3]

a) tiredness

b) like having another baby!

c) it’s really worth it [3]
——————————————————————
8/8/2011 – future was still very uncertain [55]

at times a whirlwind, extremely stressful [55]
——————————————————————
10/2011 – [10]

a) times when feel like giving up [10]

b) only have to look at Ben and Jacob to know life’s worth fighting for [10]

c) determined to give treatment my best shot [10]
——————————————————————
1/10/2012

bit of a difficult week this week, hadn’t been sleeping well due to MRI scan booked [40]

After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted, worry tumour suddenly started to grow again [40]

next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]

get to few days before next scan even sillier things start to cross mind like “I’ve eaten lots of chocolate and had a few KFC’s since last scan was my diet really bad and hasthat made it grow!?!” [40]

all sorts of worries will go through mind at this point, like anyone else in this situation will understand [40]

trying to describe just other day what its like being told has malignant brain cancer [40]

(still hate those words) [40]

its impossible to describe but so awful makes you feel like you’re character in film “Saw” [40]

Like someone has put time bomb inside your head, it will grow fast and more it grows you will slowly become more disabled, doctors tell us that current available medicines can only slow it down..there are never any survivors 12-14 months (1 year – 1 year 2 months) from diagnosis is prognosis [40]

Eventually it will win, and you will lose the fight [40]

Sometimes in morning wake up and for few seconds forget have one, everything is normal, then reality hits again [40]

so anxious at this point, think they could tell [40]

WOW [40]

burst into tears [40]

so shocked, amazing start to 2012 [40]
——————————————————————
1/13/2012

Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]

fret before a scan [43]
eat bad food [43]
made stay up late some nights watching TV instead of resting [43]

all sorts of worries will go through mind at this point [43]

diagnosed with tumour just over year ago, describes what it’s like living with malignant brain tumour [43]

it’s so awful it makes you feel like a character in the film ‘Saw’ [43]

like someone has put time bomb inside head, it will grow fast and more it grows you will slowly become more disabled [43]

Eventually it will win and you will lose the fight [43]

feel fortunate given chance to at least try treatment [43]

About improvement, burst into tears [43]

so shocked, what an amazing start to 2012 [43]
——————————————————————
2/8/2012 – [47]

big milestone of a day [47]

just wanted to wear something to cover the site where tumour is, area has biopsy scar and hair is much thinner from radiation [47]
——————————————————————
2/21/2012 – had 6 weekly MRI scan tuesday – scary time as always [48]
——————————————————————
3/25/2012 – taking small steps but feeling more like old self all the time [49]
——————————————————————
4/5/2012 – “scan week” always stressful time [50]
——————————————————————
5/19/2012 – diagnosed 17 months ago now and even on hardest days never given up hope [52]
——————————————————————
6/22/2012 – [53]

Everything takes toll eventually [53]

feel fine now and have caught up on sleep, for 6 days while off treatment awaiting blood culture results was almost as if nothing was wrong, in perfect health so breath of fresh air to have no IV bag to carry around [53]

fleeting moment of “normality” for our family again [53]
——————————————————————
7/4/2012 – [54]

been emotional rollercoaster, when look back over past year and a half [54]

has certainly been a life changing experience for us and all of our family [54]

extreme stress of situation is starting to wear off and starting to feel able to relax a little now and do “normal” things most families probably take for granted like planning ahead into future rather than living day to day [54]

don’t think its possible to describe personal experience like this, much like amazing feeling of becoming a parent you have to experience it first hand to really know what its like [54]
——————————————————————
8/8/2012 – When look back feel like looking at someone else’s life [55]
——————————————————————
8/29/2012 – [55]

its been well worth all the hard work and effort [55]

Mentally stayed so strong despite over past 12 months (1 year) having not slept full night due to infusions – calculated has had at least 2150 ninety minute infusions to date [55]

These days, life is much more hopeful and slightly less stressful [55]
——————————————————————
11/27/2012 – [56]

fight this every day for almost 2 years without ever once faltering or giving up [56]

Jacob has been here to give a reason to be strong and his unconditional love has been a huge part of healing process [56]

couldn’t be happier [56]
——————————————————————
1/2013 – Dr Burzynski has given me and my family the future back and I am eternally grateful [3]

appreciate every minute of every day [3]

I’ll finish treatment but have my life back [3]

Who knows what tomorrow holds ? [3]
======================================
======================================
HEALTH
======================================
======================================
6/2011 – [47]

whilst having radiotherapy lost all hair which fell out very quickly – in a matter of hours – too quickly to really have any time to get used to the idea [47]

(if thats possible) [47]

for woman it can be a really big part of their identity, especially if you’re just 25 years old [47]
——————————————————————
1/12/2012 – [40]

When has scan every 6 weeks to find out how treatment is going go through different emotional stages [40]

After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted [40]

next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]

eat bad food, stay up late some nights watching TV instead of resting, dragged round country parks for walks [40]

(probably in hind sight exercise is very good right now) [40]
——————————————————————
1/13/2012

has good days and bad days [43]

Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]

next day have really good day … then might have epileptic seizure, even though has a LOT less of them now [43]

4/5/2012 – feeling really good apart from sinus infection unrelated to tumour or medication [50]
——————————————————————
6/15/2012 – suspected Hickman Line infection, really exhausted and had cold shivers [53]
——————————————————————
======================================
======================================
TREATMENT
======================================
======================================
1/2009 – suffered terrible morning sickness so severe had to be admitted to hospital [10]
——————————————————————
5/2009 – morning ­sickness stopped at 16 weeks [10]
——————————————————————
9/2009 – Jacob born [2] + [10]

visited GP dozens of times [10]

At 1st doctor thought was baby blues but months after Jacob born, still felt tired, diagnosed ­postnatal depression [10]

came home with anti-depressants [10]

knew wasn’t depression because felt so happy being a mum [10]

didn’t even take the pills [10]
——————————————————————
5/27/2010 – [10]
——————————————————————
10/2010 – while family, from Rochester, Kent, were in Lanzarote, developed weakness in right arm [10]

At first thought might have slept awkwardly or pulled a muscle [10]

Some days it was there, some days it wasn’t [10]

Other times felt tingling in fingers [10]
——————————————————————
11/2010 – [2]

started to lose feeling and co-ordination in right arm which prompted an MRI scan at hospital [2]

health slowly declined over past year, never fully recovered after having Jacob and mis-diagnosed with range of things including exhaustion [2]

breakthrough diagnosis came after another visit to GP’s [10]

had a cold couldn’t shake off and went to see if needed ­antibiotics [10]

saw different doctor and he could see from notes sometimes been at surgery every week [10]

kept list of symptoms on iPhone [10]

handed it to him and he looked ­concerned [10]

been visiting surgery with different symptom every time [10]

When he saw them together, warning bells rang [10]

Although he didn’t say he ­suspected a brain ­tumour, he sent for tests [10]
——————————————————————
12/24/2010 – results arrived [2] + [10]

few days later called back for results [10]

had brain scan but also had blood tests and thought was going to get those results [10]

had found something on scan [10]

huge ­tumour [10]

doctors broke news has rare, ­inoperable brain tumour [10]

told there’s no cure and it’s growing [10]

bad news was tumour, known as an oligodendroglioma, was inoperable – deep in the brain and removing it would be too dangerous, so all doctors could do was monitor it [10]

diagnosed with rare Brain Cancer and biopsy revealed is most aggressive type of brain cancer, not only is it inoperable because of size and location but also deemed incurable using available cancer therapies in UK, which can only at best slow down growth [2]

Tests showed was low-grade, slow-growing tumour [10]

explained could have had it for 20 years [10]

reassured when read stories saying people did live normal lives with this sort of ­tumour [10]

average life expectancy poor, fewer than 1 in 100 people diagnosed live for 5 years, this cancer is common in people over 50 [2]

(approx 5,000 diagnosed annualy in UK) [2]

very rare in Laura’s age group, less than 50 cases reported every year in UK and no known cause [2]

told by doctors in UK that brain tumour was inoperable [43]

set out to find an alternative cure [43]

find clinic in Houston, Texas, run by Dr. Burzynski, that pioneers new treatment for malignant brain cancer Laura has [43]

clinic in America has pioneering treatment proven very effective against this type of cancer without harming the body [2]

clinic has been running for over 30 years and has been able to not only stabilise, but potentially cure this awful disease in some cases [2]

treatment not available via NHS [2]

most patients require anything from 2 to 4 years treatment [2]

diagnosed with type of brain cancer for which there is no cure in Britain and wasn’t expected to live more than 12 months (1 year) [37]

Since diagnosed has developed epilepsy and has multiple seizures a day [37]

right arm almost paralysed so has been unable to pick up Jacob or bathe him [37]
——————————————————————
2/2011 – right arm virtually ­paralysed [10]

also developed ­epilepsy and having seizures every day [10]
——————————————————————
4/2011

biopsy [50]

tumor turned agressive [53]

next batch of test ­results arrived [10]

results of scan and biopsy [10]

doctors said tumour had grown rapidly [10]

turned into worst form of brain cancer – fast-growing, high-grade glioblastoma ­multiforme [10]

while they could give chemo and radiotherapy to try to shrink it and prolong life, was nothing more they could do [10]

didn’t have time to lose [10]

No one knows how long has left to live – do know has most aggressive form of brain cancer [10]

If did nothing could be 6 months to a year [10]

after painstaking research found clinic in Houston, US, which offers treatment still under trial and NHS will not fund [10]

In States, critics believe it’s expensive, with no proven results [10]

read stories claiming it worked for some [10]

sent the clinic notes [10]

treatment based on clinic’s 25 years of research showing people with the cancer are lacking tumour suppressor [10]

In people without ­cancer substance kills ­growing cancers [10]

clinic doctor ­believes replacing it with drug will trigger body’s immune system to rid itself of tumour [10]

having therapy to help shrink tumour [10]
——————————————————————
5/2011 – prescribed 6 weeks radiotherapy coupled with Temozolomide chemotherapy [10]

potential life saving treatment in America [2]

travel to US for treatment hopes will save her life [10]
——————————————————————
6/2011

1) completed radiotherapy course

2) had to stop chemo after few days because allergic reaction

3) doctors very honest – couldn’t continue TMZ cycles because was allergic to it

4) original oncologist against decision to go to America for treatment because controversial and not yet approved by NICE, or any medical body

5) transferred to another oncologist willing to take me on in London

made fully aware early on that cancer treatment and long term prognosis has improved for most common types of cancers over the years [23]

has been no real improvement in outcomes for Brain Tumours – especially Glioma which although being one of most common cancers, especially in children, are most under funded types of cancer in research arena [23]

spoke to past patients in US and UK, some who were cured many years ago from ‘terminal’ brain cancers using “antineoplastons” at Burzynski Clinic in Houston, Texas [23]

clinic treats many types of cancer with other therapies but for antineoplastons primarily focus on brain cancer because it is one of hardest to treat [23]

Prior to visit to US sent sample of Laura’s brain tumour tissue from biopsy procedure to Pheonix, Arizona [23]

At lab number of tests carried out including gene expression tests, genetic tests used to identify which treatments would be most effective for Laura as an individual – backup plan if antineoplastons had no effect [23]

“FDA approved” Phase II clinical trial – specifically “Antineoplaston A10 & AS2-1” which are treatments pioneered by Dr Burzynski in mid 1970’s [23]
——————————————————————
7/1/2011

friday finished 6 week radiotherapy course [18]

treatment supposed to be given alongside chemotherapy but 10 days into 33 day course of chemotherapy developed allergic reaction and had to stop particular drug [18]

chemotherapy isnt very effective for everyone with Brain cancer and missing out on this drug also means Laura is so much stronger physically than she would have been otherwise, that coupled with great advice from our nutritionalist Jo Gamble has meant Laura is in amazing shape and able to travel to America safely to start treatment [18]
——————————————————————
7/2011 – travelled to Burzynski Clinic in Houston end of July to start Antineoplaston treatment and for Ben to be trained on administering medicine by doctors at Clinic
——————————————————————
7/2011

since starting treatment in America in July, has begun to show signs of improvement [37]

started to get use of paralysed right arm and hand back [37]

has got a lot more energy and is able to go on short walks with Jacob [37]

receive gene therapy at clinic in Texas [37]

treatment involves having daily doses of drugs and scans every 6 weeks [37]
——————————————————————
7/2011 – 8/2011 – 3 weeks there and came home and continuing treatment

(administered by Ben with very close direction from clinic)
——————————————————————
7/25/2011 – MRI scan Monday
——————————————————————
7/28/2011

had agonising wait for results on Thursday

got results “Increase in size of tumour left frontal lobe” and sent straight off to clinic, took few hours to get green light (because of time difference) and by 6:30pm got call we were waiting for from clinic FDA should give special exception without aproblem – Houston here we come [21]
——————————————————————
7/29/2011 – [21]

Ben bought Friday.morning flights “just incase” [21]

arrived in Houston, Texas Friday.afternoon after trouble free flight [21]
——————————————————————
7/29/2011 – 8/2011 – [21]

here for next 3 weeks [21]

Thanks to amazing fund raising and generosity from everyone raised enough money to start treatment now rather than 10/2011, this gives a huge head start [21]

would originally been having another cycle of chemo until 10/2011 but allergic to it so means NHS don’t have any more options available at this stage [21]

Chemo isn’t very effective for a lot of brain tumours so isn’t big loss, much better to get onto next step earlier than planned [21]

FDA law prevents clinic treating at this point unless tumour has grown since last scan [21]

(if it had shrunk from radiotherapy would’ve had to wait until end of August) [21]

in catch 22 situation, didn’t want tumour to have grown since April but also wanted to get America ASAP, UK doctors did say not to panic because even if there was growth it could just be post radiotherapy swelling, this put our minds slightly at rest [21]

decided to take additional option on top of standard treatment has come here for, option has only been available here a few months and – huge advancement in world of cancer treatment [21]

sample of tumour tissue sent over from Kings Hospital to Lab in Phoenix, Arizona [21]

Lab running number of different tests on tissue sample and also mapping DNA profile to get “molecular fingerprint” of individual tumour [21]

Everyone’s cancer is unique to them and therefore will respond best to “unique treatment plan” [21]

Lab results will be sent to clinic next week and will tell them exactly what drugs will be effective for unique cancer, and what specific genes are involved in causing cancer [21]

Gene target therapies will also be used to “switch off” genes causing cancer and “turn on” tumour suppressor genes to help stop cancer in its tracks [21]

rather than having “one size fits all” treatment be recommended treatments based on what clinic knows will be effective for individual case [21]
——————————————————————
8/2/2011 – 1st appointment Tuesday where will finally meet Dr Burzynski in person [21]
——————————————————————
8/2011

appointment booked at clinic in America for start of August so will be flying out at end of month to start treatment [18]

travel to clinic and began treatment [43]
——————————————————————
8/3/2011 – [21]

11:30AM CONSULTATION AT CLINIC [21]

journey began 8 months ago (12/24/2010) when diagnosed, found out over following weeks how generally un-successful brain tumour treatment was in UK [21]

day consisted of consultation with Dr Acelar who will be primary consultant [21]

She interviewed in more detail about condition then went off and reviewed MRI scan images with Dr Burzynski as he would have final say over treatment plan to be prescribed [21]

After agonising wait for what seemed like 10 hours but was only 10 minutes Dr Acelar came back into room with Dr Burzynski [21]

this is a guy we’ve been researching about 6 months, has been completely curing what were previously considered to be 100% fatal brain tumours, and by curing I mean for a lot of patients tumours completely disappear [21]

wasted no time explaining exactly how treatment works, basically brain cancer is being caused by up to 600 defective genes, treatment will “switch off” cancer causing genes which will make cancer cells go into “apoptosis” [21]

Apoptosis is natural cycle where cell dies and is broken down by body, in other words tumour will start to break down and dissolve away [21]

know within 4-8 weeks if working and if not then they can add in other gene targeted therapies – based on results of some genetic testing having done at the moment [21]

had bloods and physical examination done [21]

(by another doctor) [21]

and done for the day [21]

due back at clinic once they get approval from FDA to treat – which will take 1-4 days [21]
——————————————————————
8/4/2011 – [22]

just got call from clinic and now approved for treatment by FDA much quicker than thought [22]

didn’t think there would be any problems because fits criteria, having had previous Radiotherapy which is required before you can have any private treatment from Dr Burzynski [22]

waiting on appointment from doctor who’ll be fitting Hickman Line, which is IV line fitted in chest just below collar bone [22]

Having IV line fitted is more convenient that in arm long term, and allows delivery of higher doses of medicine from IV pump that will become friend for about next 12 months (year) [22]

should be getting fitted in morning (Friday), enabling 1st test dose of Antineoplastons in afternoon [22]
——————————————————————
8/8/2011 – Burzynski Clinic Houston Texas [55]

11.am connected and switched on pump for 1st ever Antineoplaston infusion, from that moment on would have to have 90 minute infusion every 4 hours – EVERY DAY .24/7 [55]

grade four cancer diagnosis let alone NHS treatment options, alternative medical research and decisions, fundraising, flying to america for a month [55]
——————————————————————
8/8/2011 – 9/2011 – doctors completely honest, said won’t know IF or how quickly will respond until on treatment for at least 8 weeks
——————————————————————
8/8/2011 – on antineoplaston therapy since

medicine rich in sodium and have to infuse 2 litres daily

(dose lasts 90 minutes every 4 hours 24/7)

drink approx 5 litres of water daily

while pump running

carrying around infusion pump all day connected to Hickman line in chest

medicine pump

MRI scan at private hospital every 6 weeks

8/2011 – came home
——————————————————————
08/12/2011

25-year-old Laura Hymas, of High Street, Rochester, has seen tumour shrink by more than a third in just 6 weeks after pioneering therapy in America [37]

already improving since treatment in USA [37]
——————————————————————
9/2011 – came home and continued antineoplaston treatment, treatment literally takes over and consumes every day of your life [55]

Not specifically side effects because been lucky enough to have minimal short term side effects, but impact on daily life – the infusions, preparing medicine bags, blood tests, etc.. [55]
——————————————————————
10/2011

hopes to have new ­treatment in US [4]

took until middle of October to slowly increase antineoplaston dose up to “maintenance dose” Dr Burzynski deems most effective for body weight

hard to see Laura suffer [4]

know in next few weeks going to lose hair [4]

Some people say should accept condition is terminal [4]
——————————————————————
11/29/2011 -_6 weeks later scan tumour started shrinking by 36% [59]
——————————————————————
11/2011 – 36% (Nov 2011) [48]

decreased in size EVERY 6 weekly scan [48]

bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons [52]

(growth stabilised before hitting this dose) [52]
——————————————————————
1/2012 – 56% (Jan 2012) [48]
decreased in size EVERY 6 weekly scan [48]
——————————————————————
1/10/2012 – [40]

scan every 6 weeks to find out how treatment is going [40]

such good result last time where tumour shrank so much [40]

there’s amazing doctor in Houston, Texas [40]

friendly, happy and kind man who is always polite and making jokes [40]

sees so many patients but makes real effort to know you as a person, who you are, where you come from, what your story is..how you got to his front door [40]

doesnt promise you anything, cannot help everyone [40]

(1st to admit that) [40]

costs are completely transparent from day one, you even get breakdown of why treatment costs what it does [40]

has many many patients who had inoperable malignant brain cancers that failed chemo and radiotherapy who are not only still alive 20 years later… are now cancer free [40]

Some patients have never had any other treatment for their brain cancer apart from Antineoplaston therapy [40]

(which is what on) [40]

family who live in Kent just 5 miles from us got in touch just before Christmas as they read about us in the local paper [40]

son had been diagnosed with brain tumour [40]

They knew radiotherapy and chemo would only be palliative and having these therapies alone at young age would shorten life let alone brain tumour problem [40]

searched and searched … Eventually like us found Dr Burzynski too [40]

sons tumour decreased in size 72.5% from 1 year just on antineoplaston treatment, then put on low dose of medicine for further 3 years [40]

tumour is still there but hasn’t grown or changed since [40]

NHS oncologist can’t understand how he’a still here [40]

was 8 years old when diagnosed, in 1998 [40]

now 21 [40]

happy healthy young man and just passed university degree, looking forward to future [40]

a lot of criticism about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski is scam artist taking money from dying cancer patients, that terminally ill cancer patients should be discouraged from “False Hope” he gives people [40]

any celebrities that try to help fund raise or appeal for people to donate are bombarded on twitter and internet with messages saying they are helping someone see scam artist and quack [40]

We have been focus of some of these groups, they have been trying to discourage people from donating to us “With Laura’s best interests at heart” [40]

already tried and exhausted currently available “conventional” medicine [40]

countless websites discussing Laura, other current patients with fund raising campagins and Dr Burzynski that contain false information about us all [40]

isn’t new thing to Dr Burzynski, he’s used to it by now but for us it’s distressing [40]

They try to find holes in Laura’s scan results when she reports good news, one person even told Laura on twitter to “F*** off” then he called her a “Burzynski Troll” and justified actions by saying Laura fake patient designed to encourage more people to give money to “Burzynski scam” [40]

REAL Stories about REAL people like the one above from family who live near us are ones that give us strength to carry on [40]

one day critics might decide there’s enough evidence to show treatment works? [40]

Just because they haven’t seen scientific data doesn’t mean something doesn’t work [40]

It’s worked for many [40]

having great response [40]

Tuesday when had scan at private hospital were walking past office afterwards where radiologist would be examining new scan and comparing it to last one taken 11/29/2011 [40]

stood outside to catch attention of secretary so could arrange next scan, at that point I saw through crack in door someone had brain scans on computer screen [40]

radiologist rolled back in his chair and popped his head round the door, our hearts were pumping as we were told we could have the result straight away [40]

radiologist had huge smile on his face [40]

Its looking good, definitely smaller [40]

walked in office, and had new scans from that day on screen with Laura’s scans from 11/29/2011 below [40]

To naked eye obvious to see tumour MUCH smaller and enhancing much less [40]

(less cancerous) [40]

pointed out some things and said haven’t finished measuring but estimate AT LEAST 25% SMALLER than last scan 6 weeks ago 11/2011 [40]

said if hang around in hospital cafe for 15 minutes he’ll finish up report and can have copy [40]

had some lunch and nurse came in short while later with report [40]

better than even initially thought [40]

TUMOUR DECREASED 56% in size since beginning American treatment 8/2011 [40]

most recent scan revealed tumour decreased massive 56% in size since beginning of treatment [43]

scan – 56% tumour decrease! [59]

latest scan shows tumour at least 25% smaller than last scan 11/2011 [43]

decreased 56% in size since beginning American treatment 8/2011 [43]

sent scan CD off straight away by Fedex to America so doctors could do independent report too [40]
——————————————————————
1/11/2012 – [40]

Yesterday night spoke to doctor at Burzynski Clinic, they’ve reviewed scans and concluded in their opinion tumour has decreased same amount [40]

need to keep on medicine into 2013 [40]

If one day lucky enough for cancer to completely disappear still need to keep on medicine up to 12 months (1 year) after, “maintenance program” designed to make sure kill every single cancerous cell because Glioblastoma Multiforme are very nasty and has “roots” that even an MRI wouldn’t necessarily pick up [40]

If stopped treatment too quickly cancer could return [40]
——————————————————————
1/13/2012 – [43]

Dr. Burzynski and clinic have been under constant heavy criticism from people believing he’s a ‘quack’ that gives ‘false hope’ to terminally ill people [43]

a lot of criticism out there about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski a scam artist taking money from dying cancer patients and terminally ill cancer patients should be discouraged from “False Hope” he gives people [43]

already tried and exhausted currently available “conventional” medicine.” [43]

diagnosed with tumour just over year ago [43]

Doctors tell us current available medicines can only slow it down – there are never any survivors 12 – 14 months (1 year – 1 year 2 months) from diagnosis is prognosis [43]

keep on medicine into 2013 [43]
——————————————————————
2/2/2012 – [44]

treatment is working so well [44]

every 6 weeks for MRI scan [44]
——————————————————————
2/9/2012 – [47]

really huge milestone [47]

Day to day been continuing with medicine [47]

attached to IV pump using hickman line in chest and has dose every 4 hours 24/7 [47]

Each dose lasts 90 minutes so really interrupts sleep patterns and makes tired – effectively infuses 2 litres of medicine directly into blood stream every day involves a lot of trips to toilet [47]

medicine high in sodium so on top of this drinks 5 litres of water a day [47]

aren’t any side effects other than toilet trips, extreme thirst while infusing and tiredness [47]

Next MRI scan in few weeks so nerves and worries setting in [47]
——————————————————————
2/21/2012 – had 6 weekly MRI scan tuesday [48]

77% (Feb 2012) 77% in just 18 WEEKS [48]
decreased in size EVERY 6 weekly scan [48]

scan was even better news – 77% tumour decrease! [59]

just got results and tumour has continued shrinking [48]

now 77% smaller than when started treatment 8/2011 [48]

amazing news, was stable few months while increasing Antineoplaston dose, then hit maintenance dose 10/17/2011 [48]

decreased in size EVERY 6 weekly scan [48]

Glioblastoma Mutliforme is most agressive cancer out there so Laura will need to keep going on treatment for at least another year to kill every single cancer cell [48]

keep treatment going [48]
——————————————————————
3/25/2012 – [49]

celebrating recent scan showed 77% tumour reduction [49]

been fighting this cancer for over year now, almost approaching April [49]

This time last year told awful news that brain tumour had changed and was now much more aggressive, had turned very cancerous and future was very uncertain because it was one of worse cancers anyone could get, on top of that it was in worst location too [49]
——————————————————————
4/5/2012 – [50]

6 weekly MRI scan went well again [50]

tumour now reduced to what doctors believe is small cavity there because biopsy 4/2011 [50]

small edge of cavity is still enhancing on scan [50]

(which means cancerous cells) [50]

enhancing less than last scan, so everything moving in right direction [50]

plan for now is to just keep going and continue daily doses of antineoplaston medication [50]

treatment working so well [50]
——————————————————————
5/15/2012 – scan Tuesday shows what remains of tumour is now at stage where hardly enhancing at all on MRI scan, enhancement now barely visible without magnifying scan images heavily [52]

“active” (growing/spreading) malignant tumour shows up on MRI scan as bright white area [52]

bright area represents cancerous cells and tumour used to light up like light bulb which was bad news [52]

aim of any successful treatment is to get rid of everything that enhances so no longer have active tumour [52]

bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons (11/2011) [52]

(growth stabilised before hitting this dose) [52]

reduction in tumour size meant able to stop taking steroids [52]

(designed to reduce brain swelling but have nasty side effects) [52]

epilepsy has got much better, especially in last month [52]

seizures much less frequent [52]

What’s left of tumour – is cystic fluid filled cavity* [52]

*cavity there from surgery (Biopsy) 4/2011 [52]

cavity may never dissapear, might just stay there because brain tissue has been removed [52]

Alternatively cavity may break down very slowly and hopefully dissapear over time [52]

Either way isn’t major problem [52]
——————————————————————
5/18/2012 – [52]

had chat with doctor over phone last night, as last scan showed very very little enhancement they have now decided to put on “finishing program” of antineoplastons [52]

If patient lucky enough to have tumour stop enhancing then they’re asked to carry on treatment for 8 months, then finish [52]

8 month schedule allows medicine to have time to kill last cancerous cells that aren’t showing up on MRI scan [52]

told once people finish schedule – in most cases – unlikely tumour will return, most people can go on to live normal tumour free life [52]

diganosed 17 months ago (1 year 5 months) [52]

“In the field of Brain Tumours there are no ‘proven’ treatments, only treatments ‘accepted’ by a group of clinicians who practise in that field” [52]

treatment isn’t guaranteed to work for everyone, but there are many long term (10, 20yr) survivors [52]

Using traditional chemo and radiation on inoperable GBM has no long term survivors [52]
——————————————————————
6/15/2012 – [53]

suspected Hickman Line infection, really exhausted and had cold shivers [53]

Burzynski Clinic very on the ball and didn’t want to take any chances, said had to take off antineoplaston treatment and go straight to hospital so doctor could take blood cultures from hickman line and arm, local doctor arranged for us at very short notice [53]

told by clinic that if infection in line it would have to be taken out and would have to have probably 7-10 day course of antibiotics…then there would be headache of how to get another hickman line surgically fitted because only GP supporting in england [53]

havent seen or had any contact with NHS oncologist since ealier this year, despite good progress so they probably wouldn’t be able or willing to help in this situation [53]

Worst case looking at about 3 weeks without treatment – huge worry because hasn’t missed single day of treatment since 8/2011 [53]
——————————————————————
6/21/2012 – blood cultures were taken and results were clear, no infection present [53]

started back on antineoplaston treatment again and could forget all problems and what if’s [53]

While off treatment had good chance to rest and relax, something long overdue [53]

hadn’t had full nights sleep for nearly 11 months [53]

medicine is very high in sodium so wake up during doses about 5 times a night for toilet trips and drinks [53]

totally burnt out last week so suspect cold shivers and exhaustion were just where needed a break and also past year catching up emotionally [53]

been rollercoaster, on autopilot so don’t think taken 5 minutes to stop and think about whats happened to family, extreme stress of situation, fundraising and worries about raising enough money, trip to america, treatment and all the controversy it attracts [53]
——————————————————————
7/4/2012 – [54]

had MRI scan last week and despite being off treatment for 6 days prior to scan [54]

(due to suspected IV line infection) [54]

NO CHANGES [54]

back on antineoplaston treatment again and still scheduled to finish treatment at end of year [54]

really lucky to catch tumour early [54]

last year only initially had 3 options which were surgery, radiation and chemo [54]

did enormous amount of research and even got MP involved with discussions with head of PCT, they confirmed all standard approaches were palliative, designed to buy time – not something we were told by oncologists, who refer to these 3 modalities as “a radical treatment approach” and give little information apart from “we’ll see what happens” [54]

they are same options that’ve been used for decades – where is the progress? [54]

Being an inoperable tumour our only options left were radiation and chemo [54]

Knowing that best radiation can do is slow down growth [54]

(in some cases) [54]

If it worked that would only be small window of time [54]

was unable to take more than few days of chemo due to allergic reaction [54]

(which in fact, looking back was actually a normal body reaction to taking a highly toxic substance) [54]

Would American treatment work or would Dr Burzynski be a crook just like all the sceptics were saying? [54]
——————————————————————
8/2012 – no trace of Tumor at all [59]

always get 2nd opinion from UK radiologist who confirms just cavity left which should resolve over time [59]

last update just after MRI scan, at which time both Dr Burzynski’s radiologist and private UK radiologist both confirmed there was no trace of residual or recurrent brain tumour on MRI scans [56]
——————————————————————
8/29/2012 – [55]

Scan: one year on treatment! on Wednesday [55]

Burzynski Clinic advised all they can see on MRI scans is scar tissue, cavity present from where tumour used to be [55]

UK radiologist was more cautious initially [55]

(probably because he has never seen a Glioblastoma dissapear before!?) [55]

he reported on scan and came to same conclusion as Burzynski Clinic [55]

reported today he beleives all he can see is small cavity/scar tissue too [55]

fact that 2 parties don’t have any contact gives us great confidence in the 2 mirroring reports [55]
——————————————————————
9/2012 – had scan [56]
——————————————————————
11/1/2012 – Laura Hymas’s MRI assessment from Dr. Burzynski 11-01-2012

So this is uh a girl who came to see you uh this year, last year

Yes
I think this is after approximately uh 4 months of treatment
4, maybe 5 months

So she’s, been on treatment 4 months, and this is when she came to see you here
This was in Ju

I’m sorry, this was in July so this must be 6 months

6 months (both)

Yeah 6 months, yes

So this was July, and this was the next one that she had

That’s right
This is November, and uh, here is now, January
That’s a substantial difference, certainly

And this is with no chemotherapy

No chemotherapy

Just the uh

Just antineoplastons only
Yes

And, and what type of tumor did she have

Only, oh one, this is glioblastoma
This is the highest malignancy tumor
Yes

So you must be pretty happy with this

Well, she did very well
I’m very glad
Yeah
Sure

So maybe next one

Especially, since it was not necessary to use any other treatment
And actually, the response was somewhat slow and we thought that perhaps it would be necessary to add additional treatment, but since she got such a nice decrease we hope we can avoid any further treatment

Yeah

But this looks great because in addition to decrease in the tumor, we see also shrinkage of uh the cavity after, the operation

You mean the cavity around

That’s right
That’s right
The cavity here
Okay
So, this also, this is also the case which means that there is certain degree of repair, from the damage that was done by the procedure
Yes
That’s correct

She had a biopsy, didn’t she

That’s right
That’s tight
Yes
Yeah
So lets hope that perhaps another 2 months or 4 months it will disappear completely
——————————————————————
11/27/2012 – scan this morning, confirm again nothing present, which is amazing news we all couldnt be happier [56]
——————————————————————
12/25/2012 – scheduled to finish treatment just after Christmas [52]
——————————————————————
1/2013 – It’s GONE

continuing antineoplaston treatment until end of treatment course in 1/2013 and will then have regular MRI scans to ensure tumour doesn’t re-occur

just taking time to relax and see out end of Antineoplaston treatment, which all being well will finish 1/2013 after next scheduled MRI scan [56]

finish treatment [59]
======================================
======================================
THOSE WHO MADE IT POSSIBLE:
======================================
======================================
5/12/2011 – Fundraising Launch! Thursday

such an amazing response and so many emails

Thank you so much to everyone, friends, family, friends of friends and even the people who have donated and dont even know us, we are really touched by your kindness
——————————————————————
7/8/2011 – family and freinds – parents, especially Laura’s mum and dad [18]
======================================
======================================
THE PEOPLE:
======================================
======================================
Alice – heard about us because her brother plays football with Laura’s nephew Joe [49]
——————————————————————
6/26/2011 – Bergin, James – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
Catlin (Alice friend Catlin) [49]
——————————————————————
8/3/2011 – Dan – Anglo-Texan friends [21]
——————————————————————
Danielle (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
Elaine (Laura’s sister) [49]
——————————————————————
Figg, Keri – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
Hills, Kirsten – Journalist from BBC
18:00! re-run at 22:30 [7]
——————————————————————
5/19/2011 – Hound, Rufus sent Twitter video to his 236,293 followers Thursday [8]

7/8/2011 – received almost £20,000 in 12 hours then more donations over following weeks as people continued to spread the word about the video [18]

7/8/2011 – Broken the £50,000 Barrier! – Update on Laura Friday: only started fund raising around 6 weeks ago! [18]
——————————————————————
6/26/2011 – Ben and 2 friends – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
5/31/2011 – Hymas, Eve (Evie) (Bens sister) – 12hr golf marathon Tuesday 7am [11]

5/31/2011 – friends at their schools who have donated to the fund [11]

5/31/2011 – Hymas, Theo (Brother) – [11]
——————————————————————
7/8/2011 – Les (Laura’s father in law) and his good friend [17]
——————————————————————
5/31/2011 – Jackson, Jemma – 12hr golf marathon Tuesday 7am [11]
——————————————————————
7/8/2011 – Jeffries, Terry …Local artist who gave a print of a beautiful painting of Venice, DeBeers diamond company donated a gold and diamond pen along with a box of 5 tickets to the Proms at the Royal Albert Hall! [17]
——————————————————————
Joe (Laura’s nephew) up north [49]
——————————————————————
Jones, Sandra – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
7/10/2011 – Local Man Donates £5,000 ! Sunday [19]

Lee – local man donated £5,000 after reading her story on leaflet in shop near Jacobs nursery [19]

Ben and Laura’s dad Fred arranged to meet Lee in a coffee shop in Rochester yesterday [19]
——————————————————————
4/19/2012 – Les (Laura’s friend) [51]
——————————————————————
8/3/2011 – Louise – Anglo-Texan friends [21]
——————————————————————
6/26/2011 – Marks, Richard – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
7/8/2011 – Meaking, Len (Les’ good friend) [17]

7/8/2011 – Auction and raffle [17]
——————————————————————
6/17/2011 – Morden, Emily – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
McKenzie, Leon (ex Crystal Palace) [7]
——————————————————————
time to meet Russ – English guy who lives in Texas who heard about us on twitter – he’s offered to let us have a car for free while we’re here saving about £1000 [21]
——————————————————————
Snowdon, Lisa [7]
——————————————————————
Stanley Family [7]

auction off their dad’s signed Manchester City football shirt
——————————————————————
STANLEY, KAYLIE (Kayley) [7]
one of Laura’s oldest school friends, sadly lost her father to Brain Cancer when they were growing up [7]

sell her wedding dress and donate proceeds to the fund
——————————————————————
Steve (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
6/17/2011 – Stevenson, Robyn – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/17/2011 – Stevenson, Sam – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/27/2011 – Taylor, Jessica L E – founder of “Share a Star” charity, Kent [15]
http://www.shareastar.org.uk
——————————————————————
6/19/2011 – Willis, Brett – on Sunday completed 60 mile London to Brighton bike ride aim to complete ride in under 5 hours and managed it in 4hrs 51 minutes! [13]

6/19/2011 – raising £619 [13]

6/19/2011 – everyone who sponsored Brett and played a part in helping us raise money for the treatment fund [13]
——————————————————————
5/31/2011 – generously hosted by Roy, Sarah and Woodage, Charlie [11]

5/31/2011 – Woodage, Charlie – 12hr golf marathon Tuesday 7am [11]
——————————————————————
08/12/2011 – funded by £75,000 raised by family, friends and strangers [37]

10/2011 – if does save her life, we can carry on raising money for others in a similar situation [4]
======================================
======================================
BUSINESSES:
======================================
======================================
4/19/2012 – Night Out event Friday that Laura’s friend Les has been busy arranging [51]
——————————————————————
4/27/2012 – Fundraising event is Sponsored Assult Course for kids Friday [49]

All children will be involved and Lofty The Lion, Bolton Wanderers mascot

children are being educated about Laura and her condition, as school feel is very important that children realise these events can occur in people’s lives

Elaine said there will be Barbeque, ice creams etc [49]
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6/27/2011 – London 52 Mile Bikeathon Completed! Monday
——————————————————————
5/31/2011 – public par 65 Bramford Golf Center [11]

5/31/2011 – Tuesday at 7am, 12hr golf marathon (golfathon)

5/31/2011 – 124 holes and almost £500 in sponsorship [11]
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6/12/2011 – Golf Marathon! Sunday
——————————————————————
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday girls are friends of Laura and all wore grey to represent their support of “Wear Grey For Laura Day” as grey represents the colour for Brain Cancer support [12]

6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday They all baked and brought cakes in and sold them to customers in exchange for a small donation [12]

6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday The branch was dressed up in silver balloons and banners to help raise awareness and set the scene! [12]

6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday raising £573.08 !! [12]
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6/20/2011 – Barclays Branch Fund Raiser Monday [12]
——————————————————————
Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425 – Steve and Danielle (their friends) run
——————————————————————
08/12/2011 – enjoyed family trip to Dickensian Christmas Festival in Rochester at the weekend [37]
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7/8/2011 – Golf Tournament Raises £4,040! Friday
Len had charity BBQ at his house last weekend and raised £500 bringing total raised to £4,040 ! [17]

7/8/2011 – arranged golf tournament wednesday Hintlesham Hallf Golf Club in Suffolk, followed by hog roast, raffle some generous auction items, some nice cake [17]
——————————————————————
7/8/2011 – anonymous golfer donated holiday to La Manga with flights, accomodation and 2 rounds of golf included! [17]
——————————————————————
7/4/2011 – Prima Montessori Family Fun Day! Monday [16]

7/3/2011 – Jacobs nursery held fun day on sunday to help raise money for Laura’s fund! [16]

7/3/2011 – nursery staff got together and produced amazing day BBQ, cakes, Tombola, Raffle prizes, Painting and messy play, a Magician/entertainer for the kids, bouncy castle and loads more …including throwing wet sponges
(and later full water buckets!)
at the staff for a few quid!
Mums and Dads even benefited – they got their car washed
(for a small fee) [16]

The family run nursery have been a great support to us and are arranging more events over the next month, we cant thank them enough for their support and the amazing job they’re doing looking after Jacob – he loves his days at the nursery! [16]

6/26/2011 – raise amazing £7,650 in total sponsorship for this event from colleagues at RWE Trading where Ben and James work and RBS where Richard works!
——————————————————————
6/27/2011 – “Share a Star” Supports Monday [15]
http://www.shareastar.org.uk
——————————————————————
4/5/2012 – relaxing spa break courtesy of The Willow Foundation [50]
http://www.willowfoundation.org.uk
======================================
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NEWS MEDIA:
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3/25/2012 – in local paper last week article celebrating recent scan showed 77% tumour reduction [49]
——————————————————————
5/15/2011 – BBC SOUTH EAST NEWS [7]
——————————————————————
2011 – BELLA magazine
——————————————————————
5/27/2011 – Daily Mirror Covers My Story Friday [9]
IPC magazines journalist [7]
——————————————————————
‘Pick Me Up’ magazine – has circulation of 400,000 copies sold every week [7]

£500 to Lauras Hope fund for her story! [7]
——————————————————————
5/27/2011 – NewsUK News,Real life: I’ll do anything I can to stay alive for my baby 12:01 AM By Mirror.co.uk [10]
——————————————————————
Sky channel 983 – family and friends not in Kent/Sussex & Surrey area [7]
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======================================
REFERENCES:
======================================
======================================
[1] – 12/24/2009 – Laura’s Tumour
——————————————————————
http://www.hopeforlaurafund.co.uk/lauras-tumour
======================================
[2] – 5/8/2011 – Our Original Appeal – 8th May 2011: Welcome to the Hope for Laura Fund
——————————————————————
http://www.hopeforlaurafund.co.uk
======================================
[3] – Hope for Laura Fund blog
——————————————————————
http://www.hopeforlaurafund.co.uk/blog
======================================
[4]
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/frontpage/4
======================================
[5] – 5/12/2011 – Fundraising Launch! on Thursday, 12 May 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/our-second-blog-post
======================================
[6]
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/frontpage/3
======================================
[7] – 5/14/2011 – Press Coverage! on Saturday, 14 May 2011. BBC SOUTH EAST NEWS & PICK ME UP MAGAZINE
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/press-coverage
======================================
[8] – 5/19/2011 – Twitter Has Gone Mad!! on Thursday, 19 May 2011. RUFUS HOUND GOES THE EXTRA MILE FOR LAURA
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/twitter-has-gone-mad
======================================
[9] – 5/27/2011 – Daily Mirror Covers My Story on Friday, 27 May 2011. COVERAGE AVAILABLE ONLINE AND IN TODAYS HARDCOPY PAPER
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/daily-mirror
======================================
[10] – 5/27/2011 – NewsUK News, Real life: I’ll do anything I can to stay alive for my baby 27 May 2011 12:01 AM By
Mirror.co.uk
——————————————————————
http://www.mirror.co.uk/news/uk-news/real-life-ill-do-anything-i-can-130745
======================================
[11] – 5/31/2011 (6/12/2011) – Golf Marathon! on Sunday, 12 June 2011. On Tuesday 31st May at 7am, Charlie Woodage, Jemma Jackson and Bens sister Eve Hymas teed off for a 12hr golf marathon in aid of the ‘hope for laura fund’
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/golf-marathon
======================================
[12] – 6/20/2011 – Barclays Branch Fund Raiser on Monday, 20 June 2011. Barclays staff members Emily Morden, Robyn Stevenson & Sam Stevenson arranged for the branch in Rayleigh, Essex to have a fund raising day for Laura on Friday 17th June
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/barclays-branch-fund-raiser
======================================
[13] – 6/20/2011 – London to Brighton Ride on Monday, 20 June 2011. A huge thank you from us to Brett Willis who on Sunday completed the 60 mile London to Brighton bike ride in aid of Laura
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/london-to-brighton-ride
======================================
[14] – 6/27/2011 – London 52 Mile Bikeathon Completed! on Monday, 27 June 2011. Laura’s fiancee Ben and two friends (James Bergin and Richard Marks) completed the London Bikeathon yesterday to raise money for Laura’s fund!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/london-52-mile-bikeathon-completed
======================================
[15] – 6/27/2011 – “Share a Star” Supports Laura on Monday, 27 June 2011. Jessica L E Taylor, the founder of the “Share a Star” charity gave Laura a personalised gift of a Star to hold with her when visiting the hospital having treatment and to take to America with us when we visit the clinic
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/share-a-star-supports-laura
======================================
[16] – 7/4/2011 – Prima Montessori Family Fun Day! on Monday, 04 July 2011. Jacobs nursery held a fun day on sunday to help raise money for Laura’s fund!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/prima-montessori-family-fun-day
======================================
[17] – 7/8/2011 – Golf Tournament Raises £4,040! on Friday, 08 July 2011. Laura’s father in law Les and his good friend Len Meaking arranged a golf tournament on wednesday to raise money for Laura
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/golf-tournament-raises-4040
======================================
[18] – 7/8/2011 – Broken the £50,000 Barrier! – Update on Laura on Friday, 08 July 2011. Following on from the golf tournament we have now broken the £50,000 barrier!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/broken-the-50000-barrier-update-on-laura
======================================
[19] – 7/10/2011 – Local Man Donates £5,000 ! on Sunday, 10 July 2011. Lee, a local man has donated £5,000 to Laura’s fund after reading about her story on a leaflet in a shop near Jacobs nursery
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/local-man-donates-5000
======================================
[20] – 7/30/2011 – Welcome to Houston! on Saturday, 30 July 2011. NOW THAT’S A SIGN WE DIDN’T THINK WE WOULD SEE UNTIL AT LEAST OCTOBER!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/welcome-to-houston
======================================
[21] – 8/3/2011 – Consultation Day on Wednesday, 03 August 2011. WE HAD A MIXTURE OF FEELINGS THIS MORNING. TODAY AT 11:30AM WAS CONSULTATION DAY AT THE CLINIC…
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/consultation-day
======================================
[22] – 8/4/2011 – FDA Approval! on Thursday, 04 August 2011. We just got a call from the clinic and Laura has now been approved for treatment by the FDA much quicker than we thought!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/fda-approval
======================================
[23] – LAURA’S TREATMENT IN AMERICA
——————————————————————
http://www.hopeforlaurafund.co.uk/us-treatment
======================================
[24]
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/frontpage/2
======================================
[25] – 8/6/2011 – IV fitted all set for Monday on Saturday, 06 August 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/iv-fitted-all-set-for-monday
======================================
[26] – 8/8/2011 – Kent is near Wales?? on Monday, 08 August 2011. ….i’ll explain the title in a minute :o) Today was first day of antineoplaston medicine at the Burzynski Clinic!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/kent-is-near-wales
======================================
[27] – 8/18/2011 – Treatment Progress Update on Thursday, 18 August 2011. Has it really been 10 days since i’ve written the last Blog update?!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/treatment-progress-update
======================================
[28] – 8/24/2011 – Our american journey comes to an end.. on Wednesday, 24 August 2011. After what seems like months, but is only three weeks we have come to the end of this part of our journey.
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/our-american-journey-comes-to-an-end
======================================
[29] – 9/7/2011 – Update since we got back home on Wednesday, 07 September 2011. Sorry for the Radio silence over the past few weeks!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/update-since-we-got-home
======================================
[30] – 9/9/2011 – Stable Tumour! on Friday, 09 September 2011. Laura had an MRI scan on monday and we got a call from the clinic last night to go over the results
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/stable-tumour
======================================
[31] – 9/15/2011 – Music Festival – Chatham, Kent! on Thursday, 15 September 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/music-festival-chatham-kent
======================================
[32] – 10/3/2011 – Remembering brave friends on Monday, 03 October 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/remembering-brave-friends
======================================
[33] – 10/21/2011 – MRI results day on Friday, 21 October 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/mri-results-day
======================================
[34] – 11/21/2011 – Update for November 2011 on Monday, 21 November 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/update-for-november-2011
======================================
[35] – 11/30/2011 – MRI Scan Day! on Wednesday, 30 November 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day
======================================
[36] – 12/6/2011 – MRI 2nd Opinion on Tuesday, 06 December 2011.
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/mri-2nd-opinion
======================================
[37] – 12/9/2011 – Cancer sufferer Laura Hymas has miracle ‘cure’
——————————————————————
http://www.kentonline.co.uk/kentonline/home/2011/december/9/cancer_sufferer_laura_hymas.aspx
======================================
[38] – 12/21/2011 – Visit to the NHS Oncologist on Wednesday, 21 December 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/visit-to-the-nhs-oncologist
======================================
[39] – 12/31/2011 – Happy New Year! on Saturday, 31 December 2011
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/happy-new-year
======================================
[40] – 1/12/2012 – What a start to 2012! Amazing News! on Thursday, 12 January 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/what-a-start-to-2012-amazing-news
======================================
[41] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura
======================================
[42] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012. Click Here if the video doesn’t load –
——————————————————————

——————————————————————
This is an interview with Dr Burzynski discussing Laura’s case and latest scan results!

Please take a look at the video – you’ll be probably as shocked as we were at what Dr Burzynski says at the end of the interview!
======================================
======================================
[43] – 1/13/2012 – Cancer patient’s husband hits back at critics… Jan 13th, 2012 @ 12:54 am › Jonathan Smith-Squire
——————————————————————
http://sellyourstoryuk.com/2012/01/13/burzynski-critics/
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[44] – 2/2/2012 – JustGiving Page & Text Donation on Thursday, 02 February 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/justgiving-page-text-donation
======================================
[45] – 2/4/2012 – Laura & Hannah Video on Saturday, 04 February 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/laura-hannah
======================================
[46] – If youre not able to view the video of Laura and Hannah click here
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[47] – 2/9/2012 – Goodbye Headscarf! on Thursday, 09 February 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/goodbye-headscarf
======================================
[48] – 2/22/2012 – 77 PERCENT! on Wednesday, 22 February 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/77-percent
======================================
[49] – 3/25/2012 – Whats Happening Now? on Sunday, 25 March 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/whats-happening-now
======================================
[50] – 4/5/2012 – April 2012 Scan Results on Thursday, 05 April 2012.
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/april-scan-results
======================================
[51] – 4/19/2012 – Night Out In Aid Of Laura! on Thursday, 19 April 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/night-out-in-aid-of-laura
======================================
[52] – 5/19/2012 – May 2012 MRI scan on Saturday, 19 May 2012. THIS MONTH IS ONE YEAR SINCE OUR FUNDRAISING LAUNCH!
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/may-2012-mri-scan
======================================
[53] – 6/22/2012 – Hickman Line Troubles on Friday, 22 June 2012. Just thought i’d post a quick update about Laura as its been a while
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/hickman-line-troubles
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[54] – 7/4/2012 – July 2012 Scan on Wednesday, 04 July 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/july-2012-scan
======================================
[55] – 8/29/2012 – August 2012 Scan – one year on treatment! on Wednesday, 29 August 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/august-2012-scan
======================================
[56] – 11/27/2012 – November 2012 MRI Scan on Tuesday, 27 November 2012
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/november-2012-mri-scan
======================================
[57] – 2/12/2013 – Ending a long journey.. on Tuesday, 12 February 2013
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/ending-a-long-journey
======================================
[58] – 3/12/2013 – Another milestone in my journey on Tuesday, 12 March 2013
——————————————————————
http://www.hopeforlaurafund.co.uk/blog/item/another-milestone-in-my-journey
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[59] – Hope for Laura Fund
——————————————————————
https://www.justgiving.com/hopeforlaurafund
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