*An appeal to help get Congress to take action follows this story*
Naomi R., a resident of Ontario, Canada, was in class one day when her teacher noticed some motor and visual deficits in the little girl in early June 2005. The diagnosis was a diffuse intrinsic pontine glioma, a brain stem tumor that leaves few options. The family was offered 6 weeks of radiation and an experimental chemotherapy drug. As the family puts it:
At the end of the six weeks of treatment, the tumor had not significantly changed. By this time, Karen and Steve had searched the world for alternate treatments. They discovered a clinic in Houston, Texas, where Dr. S. Burzynski has been treating cancer patients for nearly 30 years. He has developed and refined a non-toxic drug, which he calls antineoplastons. Karen and Steve have done extensive reading and research into this treatment. Dr. Burzynski has his detractors, mainly from the conventional scientific and medical community. On the other hand, he also has fervent supporters, from past patients, and the parents of children who are now cancer free. Steve and Karen have spoken to many of the parents of these patients. It should be noted, that there have been ongoing clinical trials of this treatment at the Burzynski clinic, under the auspices of US Food and Drug Administration.
Well, first of all, ANP is not “non-toxic.” In fact, yesterday I came across a case where one of the side effects was a stroke in a little girl. As I start this story, I have a bad feeling because the family cites as a good source of information Chase S.’s blog. He’s the little boy whose ended up in a vegetative state in the living room while the parents communicated with him through an “intuitive”–by far the worst medical situation I’ve ever heard of. Parents and patients like this need to be cared for, otherwise they will be taken advantage of. And we need to reform the system to make sure that they are protected.
The family arrives in Houston on Sept 26, and they meet Burzynski on the next day. On the 29th, treatment begins, and so do the side effects:
Meanwhile, the test dosage is being infused as I type and as she sleeps.The idea is to gradually increase the dose so long as she tolerates it.There are some non-toxic side effects and they have started. Guess what happens when all of a sudden you start to take in a lot of fluids. We are taking shifts to keep an eye on this tonight.
On Oct 5th, the Naomi herself leaves a message for all her followers:
Last Thursday I had a PETscan. I did not like it at all, because I was missing my cat a lot. It is very hot and humid. During the day I watch TV, use the bed as a trampoline and I do my homework. Getting hooked up to my pump is something I don’t like at all. I like going to the park because I can do the monkey bars without getting sore. The best thing is I do the monkey bars when I am not hooked up. I drink a lot of water because I have been very thirsty. I go to the bathroom a lot too. I don’t have any headaches and I’m feeling good. Thank you everybody for typing messages. I read them all.
The family returns home to Ontario on Oct 18th. A committee of family and friends have organized to arrange fundraisers. She reached the maximum dose of ANP in late October. She is also groggy. Further, the family is trying to have the government-run insurance plan cover the treatments, but they only deal with evidence-based medicine. She is on Decadron.
The results of the first MRI, done on Dec 1 come back from Houston a few days later:
But here’s what we know, as explained to me today by the doctor in Houston. The tumour has not increased in overall size, nor decreased. That is good. There are no new areas of tumour activity within the tumour itself. That too is good news. However, there is a 20% increase in the size of an area of previous tumour activity, but and this is a large but, this could mean one of two things. The change could be attributable to an increase in the number of dying tumour cells or malignant tumour cells. Apparently both conditions can present as areas of contrast on an MRI. This is why we need to wait for the next two, which will likely take place in early February and April, 2006. Houston considers this a “stable” condition at the moment. For now, we stay the course.
Unfortunately, the description of the 20% is not very clear. For the rest of the month and into January, things apparently are uneventful. She’s getting tired frequently, but to be fair, she is not sleeping through the night because of the constant potty breaks. But then at the opening of February:
Written Feb 1, 2006 1:05pm
The past several days have been a challenge. Naomi has been experiencing balance problems and some right side weakness. This started very slowly, maybe a month ago, but progressed quickly this past week. We have to be careful about preventing falls. This sounds scary and it is. We aren’t sure what is happening inside her head. We have slightly increased her steroid dose, which we had previously reduced. She seems a little better today. There is a possibility that these symptoms are actually a sign that the tumor may be starting to break down. Tuesday we had an MRI, which will hopefully give us a clue as to what is causing these symptoms. We knew from the start, that there might be issues like this along the way. [emphasis added]
So getting worse might be getting better. Hm. Sounds familiar. I wonder where they got that idea.
Written Feb 10, 2006 9:31am
Naomi’s spirit continues to shine through, despite the difficulty of walking and writing. She still attends school every day. Either Karen or I stay with her. We have had to make some major adjustments to deal with the new reality. The recent MRI was not the positive news we were hoping for, but Houston says the MRI still doesn’t give us an accurate picture. We are booking a PetScan to see if that will tell us more. Meanwhile, we remain positive and are working with some people in the area of energy and self healing.
Not very uplifting that post, but I do like what Naomi says when she gets a card that says she’s “sick”:
“I am not sick. Sick people don’t go to school every day and get all their jobs done. I have sick cells, but I’m not sick. Can’t they tell the difference? Please put a message on the website telling people not to send me cards that say I am sick.”
You go, kiddo!
On February 21st, it really sounds like she is deteriorating and losing more functions, but that’s not the story the Burzynski Clinic is telling:
Naomi has a very hard time standing, walking, writing and talking. But despite this, she just pushes forward, ignoring what she can’t do and doing what she can. That is why her school work, which was always important, seems to have taken on added significance in her life. And she has not lost her sense of humour.
We have to be with her 24/7 right now. The good news is that the PETscan was essentially negative. This isn’t an exact science, but Houston believes that it probably means the tumour is inactive, although it is causing her a lot of problems at this time. We have to keep working at trying to shrink it. We understand this could take many months, but we remain positive that this will happen, in time. For now, despite the side-effects, which are difficult to manage, we are staying on treatment. We will re-evaluate, as circumstances change.
On March 6, she is experiencing breathing problems, and the family makes a decision:
Naomi’s symptoms i.e., right-side paralysis and speech problems, have unfortunately gotten a little worse. As a result of her breathing difficulties, we have made a difficult decision to discontinue the IV antineoplaston treatment. The large fluid intake, which is part of the treatment, makes it even more difficult for her to breathe. For now, we will stay off treatment.
Naomi’s flame dimmed over the coming months as she slowly declined. She died on July 6th, 2006. At no point does it seem that the ANP have any sort of effect on her, other than make it difficult for her to do the things she loved during a time she would have still been able to do them, something that the family comments on frequently.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.