Burzynski Patient Levi G’s Story

On March 23rd 2001, four-year old Levi G. was diagnosed with an inoperable brain stem glioma. It’s a bad, bad diagnosis, an aggressive tumor in a delicate spot. Almost nobody lives (though there are remissions in the literature). There aren’t a lot of great treatments.

Within two weeks of the diagnosis, by April 7th, the family has already suspended radiation because of the side effects and is planning to go to the Burzynski Clinic. The clinic has acquired an entirely unearned reputation for curing this type of tumor in children. The family is already preparing to raise funds.

The family is extremely religious and they are looking for signs for what they should do. Ultimately, they take the advice of strangers at IHOP as a sign of the course they should take for their child:

After a few days of strongly resisting any ideas about “alternative treatments”, I was pouring my heart out to the Lord late at night on the day of the third (traumatic) treatment, asking God for clear direction and an end to confusion, when the phone rang. I let it ring and kept praying. It stopped ringing. In a moment or two, it rang again, and I felt like the Lord was saying, “answer it Jeff!”. So I did. It was the grandmother of a child with exactly the same kind of tumor calling from Cincinnati. Over the next half hour or so she told me all about their experiences with traditional and alternative methods, and how successful the treatments administered by Dr. Burzynski had been. Because of the incredible timing of this call, Jami and I were beginning to reexamine our stand, but the clincher came the next morning on our way home from the fourth radiation treatment.The three of us were sitting at IHOP finishing our breakfast, when two kind people came up to us and just started sharing from their hearts about how God created our bodies to heal themselves. The woman spoke about how her child had many difficulties growing up and how she had turned down the conventional methods in favor of natural alternatives – successfully. She spoke about radiation and chemotherapy, and the destructive effects they have on the body, especially children. Jami and I just looked at each other wondering what this conversation was all about. We had not yet even mentioned that Levi had an inoperable brain tumor. After we spoke about Levi’s situation and our open hearts to whatever the Lord wanted for him, the man began to speak about a doctor that has had great success with brain tumors. He was writing down his name for us to check into, and it was the very doctor we had been researching as an alternative the last few days – Dr. Burzynski at the Burzynski Research Institute in Houston. We were really stunned, because that morning Jami and I held hands and prayed fervently that God would give us an “idiot-proof” sign of His leading (“Lord, do you want us to stop the radiation and do something else? Give us a sign today of the route You want us to take”). God sent us two angels to reveal his will for us. It sure seemed idiot-proof to us.

Apparently, the doctors told them that without chemo or radiation, Levi would have 4-6 months to live. Levi is on steroids to keep the swelling down, but the he is gaining a lot weight because of it. On the 26th of April we hear that the most recent MRI shows the tumor is not growing. They seem to be trying to get on a research protocol at the Clinic.

As you all know we had the MRI done on Tuesday. The tumor is exactly the same size. Praise the Lord for that!! The FDA requires us to wait 6 more weeks before we begin treatment in Houston. We could have begun treatment immediately if the tumor had grown. So, for now we will be going to Columbia today (April 26). We will only be there today and tommorrow. I (Jami) will probably go back next week and possibly stay for the full week next week. The Dr. wants Levi to stay there as long as possible for the treatment that they can only give him there. That’s a bummer because I’ll really miss the rest of my family.

It’s very strange to me that the delay in the protocol to separate the effects of radiation from that of the chemo is being blamed on the FDA. You would think that the Clinic would want a clear, unambiguous picture of whether the drug worked.

At any rate, the family is playing the waiting game, measuring time in weeks until the next MRI to see whether or not the tumor’s progression prompts them to go to Houston sooner rather than later. They don’t have a scan until June 5, and the family is languishing, though the Make-A-Wish Foundation will be sending the family to Disney World in the meantime. They have a marvelous time. His MRI shows a tiny bit of shrinkage:

Levi is doing great! His symptoms are the same. He is still a little chubster and his eyes are slightly crossed. Yesterday, he did great with his MRI. He used to cry and go crazy when they took his blood pressure and did the pulse ox and needless to say the IV was a nightmare. But yesterday he didn’t even balk at it. He cried a tiny bit with the IV but what a long way he’s come. He is now a 30 year old in a 4 year olds body. He’s incredible. [Levi's siblings] are so excited about the shrinking tumor!! HOPE. What a beautiful thing!!

Hope is powerful, overpowering even. But at least they have stayed away from the false hope factory in Houston for a little while longer.

On the 2nd of July, Levi’s mom posts a very touching reflection from on how cancer changes everything :

It’s 11:30 at night. Everyone is sleeping. I was just thinking how the Lord gave me a gift tonight that most people might not appreciate as much as I do. Tonight, I had a “NORMAL” thing happen. Levi wanted to sleep in his room tonight. He hasn’t done that since he was diagnosed. I walked him up to his room, (just like I used to). I tucked him in and we prayed together, (just like we used to). I started to walk out of the room, (just like I used to). He said, “Mom, will you sing some songs?” (Just like he used to). One thing was different. ~ ME! ~ I used to hate when he asked me to sing. That may seem harsh but since I have 4 to tuck in, pray for, love on and talk to about the issues of the day…. extra curricular night time activity is not good. Especially with Levi. He would hold his chubby finger up in front of his face and say just one song mom. So, I would sing one song. Then I would start to leave the room and he would start to cry and say noooo, that wasn’t the song I wanted. So, I would sing another song. Again, it wasn’t the song he wanted to hear… It took around 45 minutes and 10 songs to get him to sleep. When he was sick, I would have given just about anything to hear him say, “mom, will you sing just one song?” It’s been a long time, but tonight, June 30, 2001 I heard those words I longed to hear again. It was BEAUTIFUL.. I would have sung to him all night long but he fell asleep after only 2 songs.

By August 1, Levi has started favoring his left side again and he was very ill. It seems he had contracted a virus and was not having much success fighting it off. On the 12th of August we get a peek into some of the types of alternative medicine practices the family is trying:

It’s been a while since I’ve updated you because we’ve just been so incredibly busy. I wish I could bring good news this update but it’s not that great. You remember the virus that Levi had 2 weeks ago? Well, he’s gotten over the virus however, he still throws up his medicine everytime we give it to him. So, that means he is not getting what he needs to de-toxify his body. He is still favoring his left side, he gets really tired and is extremely emotional. I know that the Lord is not surprised by this bump in the road. There is a good reason for this. We just can’t see it (yet). We are looking into a nutritionist right now. I have been cooking foods that increase the ph in the body (which is what Levi needs) but it’s really hard to think up new things. The kids are soooo sick of steamed asparagus. They used to love it but 3 nights a week is a bit much I must admit.

On the 18th we hear that the family is planning a trip to Houston:

Levi is doing the same. Which is not that great. He is still favoring his left side a lot. He barely uses his left hand and even holds it up with his right hand so that it doesn’t flop around. He gets very emotional at times and cries randomly. We have an MRI scheduled for the 22nd of August. If the results show that the tumor is bigger or even the same then we will be leaving for Houston, TX. Our tentative plans are to leave on the 25th. [Levi's dad] will come back after 4 or 5 days and [...] I will stay for 2 more weeks. I must say I look ahead with dread.

On the 22nd, horrible news:

Unfortunately we don’t have good news this time. With a heavy heart I must tell you that, according to today’s MRI report, Levi’s tumor has taken on renewed vigor. The doctor says it is 20-30% larger now than compared to the original MRI back on March 23rd, even though we all know it was shrinking as of the MRI in June, as well as by all outward evidence until just a few weeks ago.Plans are proceeding to go to the Burzynski Research Institute Clinic in Houston, Texas on Saturday where a new round of special treatments will start.

The day before they leave for Houston, Levi has surgery. Surgeons put a broviac line into his chest.  This is done in preparation for the antineoplaston treatment, which would be pumped into the arteries day in and day out throughout the course of treatment. Levi is a little confused, even a little panicky about this new thing sticking out of him, but his mother keeps her composure and calms him. Her online diary, however, reveals how she really feels:

I find myself “making” memories. I am sometimes afraid that is all I will have soon. I have been struggling with my thoughts. I look at him sleeping and see his chest move up and down with each breath. My thought is, I should enjoy watching this, someday soon, his chest might not move up and down with life. When I touch him and his body is so warm, my thought is, soon his body might not be warm. What will I do if I touch him and his body is cold. Then I can’t function the rest of the day. I just cry all day. I know these are morbid and horrible thoughts but that is where my mind has been lately. Our pain level is contingent on Levi and his symptoms. When he is somewhat “normal” we are okay. But when his symptoms worsen, we fall into desperate thoughts.

According to Levi’s father (who could not stay down there too long):

Our first appointment with Dr. Burzynski was on Monday the 27th. Levi’s treatment actually began on Tuesday and the only side effects he has had is that he is very tired and lethargic, and this was expected. The doctors have been gradually increasing the dosage volume every day so that his body can handle the “peptide fragments” circulating through his bloodstream. They want Levi to be able to attain to the 160cc dosage every 4 hours of the A10-type antineoplaston. Right now he is at 50cc.We are staying in a hotel room (clean, safe and pleasing to Jami – there is a treadmill in the exercise room), 5 minutes from the clinic. Levi has appointments 7 days a week for about 3 weeks. The first week was very trying because our appointments would last 4-5 hours. The kids would get frustrated because they would have to stay contained with us while we were learning how to administer the IV bags, tubes, flushing, programming the pump, etc. We have learned how to do everything by ourselves now so the remaining visits should not be that difficult. They are regularly checking Levi’s blood for any imbalances.

This seems fairly normal. The Clinic routinely turns out the patients on the trial to fend for themselves. While the family was at the Clinic, however, the World Trade Center was attacked. We hear about it all when the family reunited days later:

We’re Home!!!!! It was the longest 3 weeks of our lives. We started our journey home Thursday at about 1:00 pm. We drove for about 7 hours. (Of course we didn’t get as far as we would have liked to because we had to stop so often to eat. Levi is on steroids again and can’t think about anything but food. He gained 8 pounds in 3 weeks) [...]  It was the sweetest reunion!!!. [...] We were all crying. It was the most wonderful moment!!! I dreamed and cried often while in Houston about holding my boys again. It was even better than I had imagined. We were together FINALLY!!!!! When the attack came to America on Tuesday I had a panicked heart. I felt like I had to get home IMMEDIATELY. It felt as if the world were crumbling around me and I couldn’t be with my family. I went to the doctors and told them that I HAD to get home!! But they said NO.  [...] Levi’s handling his new treatment pretty well. He is extremely tired and emotional. It’s kinda hard for him to get around because he’s attached to an I.V. bag all day long. He is also having a hard time getting used to his “new” body. It’s much larger than it was just 3 weeks ago. He was sitting on the potty the other day and he leaned forward, when he did his belly scraped the toilet seat. He moaned. I said, what is it? He looked up and said. “I’m fat!” Poor little man.

The steroids are really taking their toll on him. The family’s lives have been turned into one of caretakers, as the family attends to the constant demands of the treatment:

Well, we’re getting settled in and trying to get used to the extra daily activities. We have to get I.V. bags ready and change catheter tips, change the dressing on Levi’s broviac (tube in his chest), give oral medicine…. Sometimes it takes us over an hour just to get the I.V. bags ready. I must say it’s quite comical. I’ll be cooking dinner, putting football pads in, helping with homework, talking on the phone… priming I.V. bags all at the same time. It’s kinda weird to have medical equipment spread out on the kitchen table while I’m doing my other daily duties. Everyone is already used to it. They all help out. They take turns flushing out Levi’s tubes. It’s an honored position to be able to push the syringe in. Levi has the power to choose who will be “the one.”

Of course, there is the unquenchable thirst that comes with the antineoplaston treatment, and the impact that it has on patients, robbing them of sleep and degrading the quality of their remaining life:

Levi is doing okay and only okay. He is so heavy right now he can hardly move. I can’t tell if he’s having side effects from the steroids or the tumor. I must say that I have developed a deep hatred for decadron (the steroid). I really miss his original little body. He now weighs 52 pounds when just 3 weeks ago he was only 40 pounds. He wakes up every hour and a half to go to the bathroom because of the huge amounts of fluid going into his body. So, Jeff and I rotate nights to sleep. Levi sleeps in our room on a pallet. When he wakes up to go to the bathroom we have him go in a hospital urinal because it’s just easier than getting him up and into the bathroom with the I.V. bag. We thought about just letting him wear a pull-up (diaper) but he wouldn’t hear of it.

Burzynski’s patients are often on large doses of steroids. And then bad news from the Clinic:

I just found out that Levi’s doctor in Houston (Dr. Bestak) died of a massive heart attack on Saturday. I just saw him on Thursday. I am in shock. I also talked to a guy that we met in Houston at the clinic. His father was getting treatment for a brain tumor… he died last Monday. My heart sunk when I heard.

On September 29th we get a sense of Levi’s deterioration and a look into the mindset of a family suffering so much in such turbulent and uncertain times:

Things are pretty much the same with Levi. He is still very heavy and immobile. He is still obsessed with food because of the steroids. He sometimes wakes up in the middle of the night just to ask if it’s almost time for breakfast. He still wakes up every hour or two to go to the bathroom. He is such a sweet little man. Last night he tried to go to the bathroom by himself so he wouldn’t have to wake us up. I woke up to him crying with frustration because he couldn’t do it. He has very little use of his left arm and leg and gets off balance. But what a precious angel he is to try to let us sleep.

We’re in a waiting period right now. I liken it to our country. It’s an anticipatory time of wondering what tomorrow will bring. Will we attack the enemy or will they attack us again? Will the tumor get bigger or will the treatment work? We’re just sitting around waiting

On October 3rd, we get an indication that the only thing that is having any effect on Levi and his tumor is the decadron when they try to taper his steroid dose:

We had a little “bump in the road” yesterday. Levi was having a bad headache all day. When I took him to the doctor his vital signs were bad. His blood pressure was 122/90, his respirations were 52. When Jan (doctor/friend) checked his eyes she could tell that there was pressure in his brain. So, we went to the hospital to get an emergency CT scan and an X-ray. Jan and I were thinking that maybe I had come down on the steroids a little too quickly and it was causing this reaction. He also has a cold so the combination could cause swelling in his brain. I was really nervous because he was drooling and slurring his words, he was falling a lot and his left hand was hurting now because it was drawing up so tight. But the CT scan didn’t show any acute change, the chest X-ray was good and the blood work was normal. What a relief! So, now we’re just working on getting rid of the cold and we’ll have to up the steroids again. We’ll schedule the MRI a little earlier than originally planned. So, it will probably be sometime next week. …yesterday constituted a bad day…

On the 12th, we hear about more deterioration:

The MRI was Wednesday. The tumor is basically the same size, maybe a tad bigger the radiologist said. That was good news to us. His symptoms are basically the same. He is just so heavy (he is 60 lbs now). He is in a wheelchair now because he can only walk a few steps (very wobbly steps) before he is exhausted.

We have had a few “setbacks in hope” in the last few weeks. The neurosurgeon told me that we needed to decide if (in an emergency situation) we want to have a shunt put in or not. In other words: Do we want to just cut to the chase and let the inevitable (death) happen sooner since a shunt will only buy time. When he said that I was shocked. I couldn’t believe we were at this point of decision making.

So the antineoplastons have not stayed the tumor. This is important.

On the 18th we get another update, continued and quickening worsening of symptoms:

On Monday the 15th we had a rough day. The whole night Levi was frustrated. When I would stand him up to go to the bathroom he couldn’t stand. He has been having trouble for a while. But it was different; it was much, much worse. He would put his left leg down and fall, immediately. It was completely useless. When we got up in the morning he was really slurring his words badly. I couldn’t understand anything he was saying. Somewhere around 10:30 am he started saying he had a headache. Usually when he has headaches they only last a few minutes and then they’re gone. But this time it lasted more than an hour and he was wrenched in pain, he wouldn’t even touch his head. I made a few calls and started packing us a bag just in case we had to stay the night. I must admit at this point I was wondering if we’d ever leave the hospital. He had gotten so much worse overnight. I was afraid of what the day would hold for us. Jeff came home and we went to the emergency room. [...]

What happened next is as infuriating and inexcusable as it is predictable:

The next day we talked to the doctors at the clinic in Houston and found some answers. According to them the tumor was breaking down. When it breaks down it causes swelling which causes pressure. We had to up the decadron (steroids) a little to keep the swelling down so that he could tolerate a higher dose of the treatment. They told us before this that he would get worse before he got better. But at this rate I wonder if he’ll ever get to the “better” part.

According to the patient, the doctors at the Burzynski Clinic told them that his slurring and drooling and inability to stand was IMPROVEMENT. Not only that, but that it is the tumor breaking down. This is not the first, second, or the fifth time that we have seen worsening symptoms described as improvements. Patients often report excitedly that their tumor is “breaking up on the inside” or that a fluid filled cystic region has opened up in the middle. These are almost universally embraced by Burzynski’s patients as evidence that the tumor is dying and that ANP is working. Unfortunately, this is far, far more likely to be because the tumor has actually outgrown its blood supply and is dying in the middle. Every competent oncologist knows this is probably a dire development, yet Burzynski’s patients seem to believe that this is good news. We have found the same story repeated over at least 20 years:

This is part of a larger pattern which is every bit as disturbing, patients reporting that worsening symptoms are signs of getting better, which may be comforting but is self-defeating and always ends badly. The claim seems to be that the tumor is swelling because the drugs are killing it, or that the immune system can’t keep up with all the remains of the tumor, or something. This is exactly the case that was made to Levi’s parents. Now if the Clinic knew in 2001 that the tumor growing on your brain stem might swell because of treatment, you’d think that this would appear as a side effect in a patient “consent” form over a decade later. But it doesn’t:

consent1consent2consent3

“Your tumor might squeeze your brain stem” should be under “most common serious side effects” (we’ve seen it so much in patients’ last days that it should be listed there), but you would be wrong. It’s nowhere. Nowhere does it say that your tumor might get bigger. This is unexcusable and THIS MUST END!

5 November, Levi is in a pitiable state:

Yesterday he was very lethargic. Last night we were playing a board game and he just stared at me the whole time, as if he were looking right through me. [...]

(Later the mother mentions that Levi is having “seizure days.”)

The last couple of days have been hard for us. We’ve just been sad. I mean what else can you be but sad when you watch your four year old boy struggle to eat, go to the bathroom, play a game. Everything is difficult for him. Yesterday [Levi's sister] had a new pink dress on with white tights and black patent leather shoes. She looked down at herself and said, “Mommy, I look beautiful today, I want to dance.” Then she turned and looked at Levi and said, “Levi, I want to dance with you.” Usually, Levi would have been so excited about the offer. But this time he looked at her with an irritated smirk and said, “I can’t dance, I can’t walk.” But then she couldn’t understand him so she had to say “what?” about 3 times. Needless to say he was in tears by the end of that conversation.

Levi turned 5 on the 15th of November. He thought that they were going to take out his broviac line for his birthday:

About two weeks before his birthday he made a comment to me that makes me believe his “big day” was a disappointment to him: I said, “Are you excited about your big #5 birthday?” He said, “Yeah, because I won’t have this (pointing to his broviac tubes).” I had to be the bearer of bad news and tell him that the tubes would have to stay. His bottom lip poked out and his shoulders fell in huge disappointment. For some reason he thought that since it was his birthday we would take out the broviac and he would be “done” with it, he would be “regular” [...] again. Oh how I wished and dreamed. But the battle goes on, it is no respecter of “special days.”

The very next day, Levi’s condition deteriorates greatly:

Yesterday Levi went into what appeared to be a coma. Jami called 911; the paramedics and fire truck were there in minutes and transported him to the nearest hospital, where they decided to “Life-Flight” him to Emory. There he got a CAT scan, which indicated no change since the previous one (good news). They say he did not slip into a coma, but are theorizing other causes for the loss of normal body functions. Presently (1:50 PM) Levi is in intensive care and considered critical, he has fluid in his lungs and needs help in breathing.

It makes you want to know exactly who told this family that their son was improving.

On November 20th, Levi’s grandfather reports the that the doctors believe Levi has less than a week to live.

On the 24th, the grandfather reports:

I just spoke with Jeff at the hospital, where they had just finished a meeting with the doctors and decided not to reintubate him when they remove the ventilator, even though they know (humanly speaking) Levi will most likely not be able to breathe on his own – the only “life-support system” they are interested in is the non-artificial one that God provides!

The decide to bring him home, and his parents update the site to tell the story in more detail:

On the Saturday before Thanksgiving we had a wonderful morning. We all just stayed home together. There was no place we had to be and that is a rare thing for us. Levi wasn’t feeling that great and wasn’t hungry at all which was really different. In the early afternoon he threw up. We knew this was really bad and meant that the ventricles (which bring fluid from the spine to the brain) were swollen and blocking the flow. He was still coherent though so I was hoping maybe it was just a virus. I put on some shorts and a T-shirt and got in the tub with him and held him in my lap because he was “wobbly”. Jeff went to get him a drink and  [Levi's brother] and I were just talking to him. All of a sudden he said “Uh oh, Uh oh, I feel funny” and immediately stopped breathing. [Levi's brother] ran to get Jeff. We carried his sweet little limp body to the bed and were trying to get some sort of response out of him. He started to breathe off and on but very sporadically. He began to throw up again, and again. We were terrified. As I was on the bed holding him Jeff laid down (prostrate) on the floor and began to cry out to God. “Please Lord, have mercy on our son, Please God don’t take him…” We called the ambulance and they were there in probably 3 minutes. They rushed him to Gwinnett Medical Center because it was the closest. Then they Life-Flighted him from there to Egelston Children’s Hospital. We were so afraid. After this long eight month battle was it all over now? I was so weary from the constancy of the practical side of the “fight” but I would do it all over again and again if I was given the choice.

After meeting with the doctors on Saturday we decided to transport Levi home with no order to resuscitate. There was no reason to believe (naturally speaking) that Levi would live through the night. We told the hospital staff that it was our desire to get him to our house so he could die at home (and in no pain). [...]

[...] Levi is opening his eyes, he is responding to questions by nodding his head (he cannot talk) he is moving his right arm and leg occasionally and breathing on his own with much help from an oxygen mask. There is not much more to tell.

He does survive the extubation, and while he rallies for a bit, late in the morning of December 20th, we receive this post:

So far it has been a rough one. Yesterday Levi had a really bad day: difficulty breathing, not eating all day and just generally frustrated with his situation. We had a group of prayer warriors come last night and it was an incredible time of the Lord meeting us there. Levi was breathing much easier and seemed fine. We went to sleep at about 12:30am. I woke up at about 2:00am to Levi’s loud and labored breathing. We’ve been up ever since. [...]

Levi is still breathing with extreme difficulty. His color is bad…. the natural mind can’t help but think the worst.

Levi died on December 20th at 1PM, nine months after his diagnosis, well within the normal range of people with his diagnosis. The antineoplastons did nothing more than make him suffer unnecessarily.

Thankfully, it seems that the era of antineoplastons is over for the time being. Last year, a child died while on the treatment, but for some reason this was reported to the FDA and reported in an SEC filing. They have suspended the clinical trials of antineoplastons. If Levi was on one of the clinical trials, it has never been published. Dozens of trials were opened, according to Burzynski’s lawyer’s memoir, to “make sure Burzynski could treat new patients”,

[...] Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future. [...] We heard that the FDA had to put together a fifty-person task force to review all of the protocols Burzynski submitted.

NONE of Burzynski’s clinical trials has EVER been published. Every patient who ever paid to be in a trial has been betrayed. Every one of them who thought that their treatments and suffering was contributing to the treatment of horrible diseases has been betrayed. How many hundreds of the most desperate patients, the most sick and vulnerable people imaginable, have been betrayed by the Clinic’s apparent inability to publish a single completed study?

By god, how much longer must we tolerate this shameful presence?

Please consider giving to St. Jude’s, a children’s hospital that turns away nobody and helped a young friend of mine who is no longer with us. Find out about real clinical trials by visiting clinicaltrials.gov.

About these ads

One comment

  1. Pingback: Daily Overload – News in short (03-11-2013) « The Skeptical Bear