*An appeal to help get Congress to take action follows this story*
The tumor on Haley’s brain stem has a very bad prognosis (a survival rate of basically zero). It’s so bad that the family makes a very, very hard decision early on:
The chemotherapy and radiation treatments that typically prove so helpful in combating cancer would prove to only make Haley sick, reduce her quality of life and, ultimately, do nothing to help her situation. For these reasons, Michele and I decided that it would be in Haley’s best interests to forego the treatment and accompanying discomfort. Like most parents, Michele and I have no interest in seeing our child suffer and decided it was now our job to see to it that we make every moment of Haley’s life as wonderful as we possibly can.
She initially spent about two straight weeks in the hospital but got out to go shopping with all her friends thanks to Make-A-Wish. She’s on steroids, which seem to have an effect, and she goes home on the 21st. The family is bathed in the love and support of the community. The family, Catholics, prays for the intercession of Pope John Paul II (miracles are steps along the way to canonization).
On April 5, we hear news that the family has made a treatment decision:
Written Apr 5, 2007 7:36pm
Good evening to everyone. I am sorry for not posting on caring bridge lately.We have some exciting things going on and I was trying to hold out until we had some definite news. However, we didn’t get the news we were hoping for today so I will tell you what is happening and all of you will have to wait just like us.
Dr. Burzynski has had success treating brain stem gliomas and we’re praying this is Gods answer to all of our prayers. We should know something within a day or so. I have done a ton of research and gotten some other opinions (one opinion was from a local Dr.) and feel this is the best we can do for Haley. It is definitely better than the treatment plan she is currently on, which is nothing. I spoke with a parent of a patient of Dr. Burzynski last night and Dr. Burzynski saved his daughters life. She had the same type of tumor that Haley has. SO THERE IS HOPE!!
I don’t know who they talked to, but man, it looks like they are being funneled into the treatment by the patient group. Anecdotes are powerful persuasion, and this family has had NO good news at all. Unfortunately, that makes them vulnerable to the false hope provided by miracle treatments and quackery.
The treatment for Haley is tremendously expensive. The initial treatment at the Burzynski clinic is $20,000 and treatments thereafter are $8000 per month.I hate to ask everyone for donations, however, I have no choice and this is what could save my babies life. Please give to Haley and pray that she will be accepted to the Burzynski clinic. I have a really strong feeling that she will be accepted. The doctor that I spoke with today thought Haley would be a good candidate because she has had no chemo or radiation.
The family seems not entirely sold, because we hear this on April 6th:
As the majority of you have seen on Haley’s other web site we are considering a Dr. in Texas. I need some help with this decision. I know it is ultimately Michele and my decision, however, I have read and read and read about the Burzynski clinic and I don’t know what to do. The scary thing is if we decide not to go to the Burzynski clinic I don’t know what else we might do for Haley. I would like any of you that have time to do a little research and let me know what you think. I suspect we will hear from them on Monday and will need to make a decision about going or staying.
Nonetheless, the family raises gobs of money very quickly. $7,200 over a weekend with a car wash and a bowling night. The local police and firefighters raised $12,000 at their “Guns and Axes” event later in the month. Burzynski’s insanely high fees are extracted not just from families, but from entire communities.
On the 9th, they announce they are headed to Texas and it is clear that they desperately want to be convinced that Burzynski is not a shonk. I can’t judge them (and neither can you). People who are this vulnerable need to be protected, and in this case the system failed them.
Okay, here are the plans thus far. Michele, Haley, and I are flying out tomorrow evening and will be consulting with Dr. Burzynski on Wednesday.I have talked with St. Jude, The Children’s Hospital in Houston, and MD Anderson. Honestly, I wasn’t happy with the treatment options these hospitals had to offer. I truly feel as if God is leading us to Dr. Burzynski. I know some people would rather see us go another direction, however, I am going to talk with them and see if Michele and I think this treatment plan will work for Haley. Something deep inside is telling me this is what we are supposed to do. I ask that everyone continue to pray for Haley. She is so excited to be going back to Texas and she was really excited to know that the doctor finally called this evening.
They visit the Clinic and after a day of consults, this family is snagged.
Written Apr 11, 2007 6:32pm
I know all of you are anxiously awaiting some news and I have some news to give you. We had a long day consulting with all of the doctors at the Burzynski clinic. A lot of the information I already knew from all of my research, however, I didn’t know what Dr. Burzynski himself was going to say. Dr. Burzynski said we have about a 70% chance Haley will see positive effects from the medicine.
It’s clear who the family consider as the physician:
Today Haley began the healing process. She started her treatments and thankfully she has had no adverse reactions. She is hooked up to her pump and will stay hooked up from this point forward. Dr. Burzynski started her on a small dose of antineoplastons and will increase the dosage each day. She is doing pretty well thus far. She was also placed on a diet to monitor her salt and sugar intake. She is not too happy about that. Hopefully we can keep her rather large appetite under control.
A couple of points. Burzynski is allowed to do what he does to people only because his lawyer managed to convince a judge that Burzynski is not liable for the actions of physicians in his employ. Yet his patients seem to think something else is going on. What gives? Secondly, the dietary changes are associated with the toxic side effects of this particular type of chemotherapy, some of which, by Burzynski’s admission, has led to patient deaths.
The metabolic consequences of this therapy could be disastrous, said Bruce Chabner, chief of medical hematology and oncology at Massachusetts General Hospital. “As a rational physician I would never do something like this,” Chabner said. “This makes no sense.”
In a document released at recent hearing held by Rep. Dan Burton (R-IN), chairman of the Government Reform and Oversight Committee, FDA officials said that according to Burzynski’s data, 4% of his patients died while on protocol. According to FDA, hypernatremia-an elevation of serum sodium levels-may have been a factor in the deaths of 1.7% of patients enrolled in the studies in 1997 (The Cancer Letter, April 24).
Burzynski said his patients are encouraged to drink large amounts of fluid, but sometimes neglect to do so.
“When they stay in Houston, we watch them very carefully, and we monitor fluid in and out very carefully, and we try to convince then that this is important to do,” Burzynski said. “But sometimes they don’t drink as much fluid as they should, and then they may get dehydrated, and they have an elevation of sodium.”
Burzynski said the sodium levels are usually brought down successfully.
“In practically all of these cases except for two cases we were able to reverse hypernatremia and bring this to a normal level, and the patient did not die as a result of hypernatremia,” he said. “We had one case when a patient developed hypernatremia and intracerebral hemorrhage, and he died without having a chance to bring hypernatremia to normal. We had another case when a patient who had extensive liver involvement which can cause hypernatremia also developed hypernatremia, and she did not wish to have any treatment for hypernatremia, and she also died.
“So we have two cases in which we couldn’t bring hypernatremia under control,” Burzynski said.
And the elevations of sodium levels is exactly what we see on April 25th:
Haley continues to have good days, which is good news. Her treatments are going good other than it makes her have to use the restroom more than normal. She has been getting up three and four times during the night which causes her to be a little tired during the day.
On the 3rd, well, Haley does sound like she’s feeling too hot.
It’s Thursday and we are being discharged from the Dr. Burzynski’s clinic.We will be heading back to Florida on Monday. We are going to spend the weekend with our family down in Victoria before we come back. Haley has had a few rough days and the doctor says she will continue to struggle a bit before she gets better. She is having a tough time walking and talking.I am definitely concerned, however, the doctor said it is to be expected.We just ask that everyone keep praying for her and in time she will get better
On May 6th, however, we hear that Haley’s symptoms are getting worse:
I pray with all my heart that GOD will intervene on Haley. It is really hard to see her struggle so badly. She has lost the majority of use of her left leg and left arm. I ask everybody to pray like you have never prayed before.Now is when she needs your support the most. I pray this medicine will begin to work.
On the 8th, it seems that Haley is having a hard time “walking, talking, chewing, and keeping her eyes open.” On the 14th:
As far as Haley’s condition I really don’t know what to say. She is like a roller coaster, up and down. Her condition is really day-to-day. Today she had a tuff time getting her words out and she gets really frustrated when you can’t understand her. It breaks my heart to see her have to get upset because she is having a hard time talking.
This evening she was having a tuff time breathing, however, we hooked her up to the oxygen machine and that seemed to help. She is asleep for now and we are getting ready to go to bed as well. Haley will be up about seven to ten times during the night using the restroom.
Next, on the 18th, we get the “good news” that is in fact very bad news. The tumor is dying in the center:
Today Haley had an MRI to see what’s going on with the tumor. We were wondering if the symptoms she is having were due to the growth of the tumor or from fluid / swelling around the tumor. WELL I AM HERE TO TELL YOU THE TUMOR HAS NOT GROWN AND THE CENTER OF THE TUMOR IS BEGINNING TO BREAK UP OR DIE. Is that not the best news we have had in sometime? We are so excited I can hardly contain myself. I realize the fight is not over, however, my little girl is winning her fight.
Tonight is the update we’d always hoped we’d be able to write, but it has taken an enormous amount of faith and hard work to get this far – and there were many times we didn’t think this would happen.
Amelia’s tumour is dying, from the inside. We’ll be getting another opinion from here on this, but the scans do back this up. There are cysts forming inside the tumour where cancer cells would have been before.
For the moment, we seem to be winning our little battle.
Orac called it, however, from across the ocean. That pattern of necrosis is far more likely to be a sign that a tumor has outgrown its blood supply than it is to be a reaction to the medicine. Her symptoms–hell, her breathing–are getting worse, and this family thinks she’s getting better?
Amelia, by the way, died last week.
How in the hell is this allowed to carry on? Does governmental oversight disappear when a patient goes into a clinical trial? This has been going on for decades! This very same line!
Haley has good days and bad days over the next several months…there seems to be little change in the tumor. She walks a little, but uses a scooter to get around. And the family latches onto little victories, like on July 14th:
I have bit of information that I wanted to share with everyone. I don’t want to get to excited, however, I can’t help myself. Haley told us today that she isn’t seeing double!!!!!!!!! I don’t know if the double vision will come back or if it has gone for good, however, this is really good news. There was a gentleman that I spoke with whose daughter had DIPG who also was treated at the Burzynski clinic and cured. The first positive sign he had with his daughter was her vision going from double to single. It looks as if Haley might be having the same results. I
On the 18th, four days later, we hear:
I know it has been a few days since I last posted and I am sorry for not posting sooner. I have to admit it gets really hard to post information about Haley when I have no good news. Haley has had a very rough week and I am struggling as well. I wish I could explain how I feel but words simply can’t do it
And 5 days later, we learn she is back in the hospital:
Last week she started having various complications, and now she is in Arnold Palmer Hospital in Orlando. Thursday they ran another MRI and discovered she is suffering volume loss to her brain. What that means is some of the brain cells are dead, and some are inflamed. Unfortunately, the doctors do not know what is causing the damage to the brain cells. […]
We asked Houston what they thought and they never had a patient with that kind of symptoms for their treatment. Dr Eslin said he never saw this symptom with steroids, however he is getting with his team for more info. He also said Haley has more areas of the brain that has irritation of cells and if we don’t know what is causing it, the cells will continue to die… and they don’t regenerate.
We get the following update:
Written Jul 25, 2007 12:19am
Well, the good news is Haley didn’t have a fever all night or throughout the day. We spoke to the neurologist who gave us some new info…Haley did have a stroke within the past two weeks. […] It was in the front left area of the brain. He said strokes are not typically associated with pontine gliomas so he can’t explain what would have caused it. He also ruled out the decadron steroid causing brain volume loss. We are still waiting for more info from the Houston Clinic about their treatment possibly having some cause for this. We are not blaming the treatment, but it either has to be that or just some really odd thing going on with Haley and her body. Who really knows what the hell is going on. We hope to have some answers soon as to what is causing this brain volume loss. As of last Wednesday Haley has not been on the treatment and will not continue until we get some answers from Houston.
The medical team decides that the ANP was the likely culprit. She is taken off the treatment.
As far as Haley and her cancer…Michele and I have decided to let the Lord decide Haley’s fate. Due to the latest developments (brain volume loss), which we think is being caused by her treatments we are going to stop the treatments for now. We will have another MRI in 4 weeks to see what is going on in her head. If the irritated areas in her head have cleared up then we will have a pretty good indication as to what was causing the brain volume loss. I know everyone had really high hopes for the Burzynski treatments, however, I’d much rather have God’s treatment anyway.
Haley starts to do well enough that she can start to attend school, and she gets the grades while she is there. Her MRIs aren’t changing much:
Written Sep 25, 2007 11:31pm
Well I know there are a number of you that were awaiting the results from Haley’s last MRI. Well we finally got the answers today so I thought I would relay the information to all of you. Haley’s tumor and her brain volume loss is stable, which means there was no change from the MRI taken back in July. The biggest issue was we had aside from the tumor was the brain volume loss, which we believed was a result of the treatments from the Burzynski clinic. We are not 100% certain the treatments caused the brain volume loss, however since we have stopped the treatments the brain volume loss has stopped as well or should I say it is not gotten any worse.
On the 26th they hear from the Burzynski Clinic:
Written Sep 26, 2007 9:01pm
We also talked with the Burzynski clinic today and may have come to a conclusion on the brain volume loss that seems to make sense. The Burzynski clinic doesn’t think it was ther steroids or the antineoplastins that caused the brain volume loss, but the increased cranial pressure from the treatments. Basically, it wasn’t the medicine but the increased pressure caused by the medicine. Hope that makes sense to all of you.
Got it. It was the medicine. The only thing ANP did was give her a stroke. Go to hell, Stan.
Haley lived through November and had high honors (no grades under a 90%) for her schoolwork at the end of the term. She passed away on 19 December 2007.
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.