On the 1st of August, the family is off to Houston to visit M.D. Anderson, a world-class cancer research hospital:
Everyone here is amazing. This place is the size of a small city. The RMDH is literally only five minutes away. I will write a whole chapter on the wonders of the RMDH later. Our spirits are higher now than they’ve been since the diagnosis. We really feel like we are now where we’re supposed to be.
She’s been accepted into a study that begins by administering high doses of methotrexate (it kills folic acid, as I understand it…preventing cancer cells from spreading). It’s going to be a long journey.
By mid-August, Sahara has started chemotherapy. They have taken in a little of the city, as much as they can, given the circumstances. And the treatment, early on, has not taken a toll on her hearing, as they feared it might. Also, at some point, Rick Springfield–yeah, that Rick Springfield–holds a benefit for Sahara and brings her up on stage!
Sahara continues with treatment and is able to return home to Missouri for a bit. They are back in Houston on the first of December for another MRI. What I have come to learn from this project is that the anticipation of MRI day is horrible. Families talk about it for weeks before it comes up. It’s agony. And this is not a good MRI:
They told us at the beginning, when Sahara first got sick, that this was going to be hard. A truer statement was never spoken. Our greatest fears became reality yesterday, when we got Sahara’s MRI results. The tumor has not shrunk any more, and has in fact grown since her last MRI on October 30. We knew by the way she’s been acting and feeling for the last week that something was not right, and now we know why. We have been given some new options, which we are going to be considering this week. Our prayer is that we will choose the right one, and that God will send us in the direction that we are supposed to follow.
We have, so to speak, “backed up and punted.” During the time that we were at MD Anderson, I continued to do research on treatments for brain tumors. I knew we had to have a Plan B ready in case things did not succeed at MDA. There are so many promising treatments out there; not all of them are in the realm of traditional medicine, not all of them are in the United States, and not all of them are accepted by mainstream society.
Time after time, as I studied as much information as I could, the name of the Burzynski Institute in Houston kept popping up. We’ve even had a couple of encounters with people whose lives Dr. B has touched. He has made remarkable progress in treating a variety of cancers with what are called “antineoplastons.” He has had some amazing results in treating patients with brain tumors. They are conducting a number of FDA clinical trials with these ANP’s…and Sahara qualifies for one that targets tumors like hers. (emphasis added)
It’s very hard to fight that type of PR. Personal stories are convincing. Imagine that you are in the market for a new car. Consumer Reports says that a popular Toyota model has a 99.9 satisfaction rate. Your brother, however, had one and it was a lemon. Most people will allow your brother’s personal story to override the statistical evidence. That’s why we have been forced to write this site, to bring forward the stories that Burzynski would rather you not hear. And we have gathered as many failed treatments in a month here as he has gathered “successes” in over 35 years.
Plan B is now in full swing, and once again we are Houston-bound. Paperwork has been submitted, medical records have been transferred, and on Monday at 8:30 am, Sahara will become a new patient at the Burzynski Institute. By the grace of God, Monday marks the exact day that enough time will have passed, post-chemo and post-radiation, in order for her to begin the new treatment. We’ll be in Houston until her ANP dosage is established (they are going to try very hard to have us home by Christmas). We will be trained on every aspect of the treatment, including administering them to her ourselves. After that, we will be doing her treatments at home. ANP’s are non-toxic…they are not chemotherapy. They work to reprogram cells, getting rid of cancer, and bringing back healthy cells. They are administered through an IV with a small, portable pump (via the portacath that she already has implanted in her chest), 24 hours a day. She will be free to do as she pleases, because the pump will be contained in a small backpack. It might be a bit inconvenient, but we hope to someday look back and know that it was totally worth it!
Independent investigators who worked with antineoplastons confirmed that the treatment was associated with substantial toxicity. “We found severe toxicity in three of the nine patients, which necessitated stopping treatment,” said Mark Malkin, associate attending neurologist at Memorial-Sloan Kettering Cancer Center, an investigator in the NCI-sponsored trial.
Or as another expert put it:
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.”
A patient who does not understand that their sodium levels may go bonkers when they enter a trial cannot be said to be participating with “informed consent,” as far as I can tell.
In this case, however, the family does not want to put Sahara through more chemo, given the possible side effects. Sometimes allowing patients to have informed consent means delivering bad news.
On December 12, we learn that charities do not look kindly on Dr. Burzynski, probably because of what they would be abetting:
We drove to Texarkana on Saturday, then finished the trip yesterday afternoon. Got to the RMH, only to be turned away. They wouldn’t give us a room because we aren’t going to MDA or Texas Children’s. No dice if you are a Burzynski patient. I was pretty upset, and I plan on writing a letter to the top dogs, wherever they may be. A sick kid is a sick kid – they shouldn’t dictate where you go for treatment. Anyway, we are staying at a Studio Plus. Not fancy, by any means, but it serves the purpose. It’s a little closer to the clinic, which helps, because traffic is horrible. I’d rather drive in LA any day.It has been a long day, but a productive one. We are very pleased so far with Dr. B and his staff. The clinic is awesome and the atmosphere is very upbeat and positive. Did a battery of tests today, but couldn’t start treatment yet. Have to get another MRI first. Hopefully we can start treatment tomorrow, or Wednesday morning at the latest.
They start the ANP boot camp, a few weeks of managing the administering of doses of ANP that all patients apparently have to go through, on Dec 15th, 2006. Oh, and they find out that Sahara will have to be on a low-sodium diet, what with all the toxic chemotherapy and all.
Apparently it’s a very fine line…either the tumor hasn’t progressed, or it has grown just a tad, between 1 and 3 mm. They FedExed the scans to Dr. B’s office today. […]
The one variable we do not know is what was happening during the couple of weeks in which she received no treatment of any kind. It is possible that there may have been growth, but the treatment reduced it. We just don’t know.
On Jan 22nd, Sahara’s family and friends are delighted that the tumor is stable. On the 28th, however, we hear that she is having news symptoms:
While the rest of us were out learning the lyrics to Fergalicious and then turning them into something fun (I personally have been silently mumbling Soupalicious all day) Sahara’s brain decided to take a momentary zigzag.Over the last couple of days, she’s had a few new side effects and symptoms, most of which are more annoying than anything else. For example, she’s had some double vision. Now, that might be weird…
Last week an MRI showed that she had fluid building up in her brain, and it was unable to drain itself naturally. It was causing a multitude of problems and a whole lot of misery for her, and it was time to get it in check. This week she had surgery, and received a ventricular-peritoneal shunt (VP shunt, for short). The shunt drains the fluid from her brain into her abdomen. She woke up smiling in the recovery room! It has already given her so much relief, and she is feeling better each day.
The official MRI report from Houston today is a bit different, as I expected. They take into account the entire dimension of the tumor, not just individual “sides” as measurement. While it’s true that the tumor lost some volume on one of the sides, overall it has shrunk by only about a millimeter. They are still calling it stable, which is also great news and nothing to sneeze at. I thank God for this!
By mid-month, the family has had a ramp installed at their house, which is a big help.
In May, the fundraising continues apace. It has been constant for months at this point, and Rick Springfield (I’m not sure of the guy’s relationship to the family, but he’s there the entire way) raises a lot of money for them.
The verdict: Sahara’s tumor is still stable with NO new growth. No fluid buildup, no swelling…YEAH!!!! We of course want to hear that it is shrinking into oblivion, but that will come in time.
The shocker came with the next part of her report. The radiologist brought her the MRI reading and said, “This is a low-grade tumor, right? It appears to be dormant.” She was as stunned as I STILL am by that statement. She told him that it had been graded stage 4, glioblastoma multiforme when it was diagnosed last July. Well, right now it is NOT behaving like a GBM.
Could it BE that everything we have done to this point has actually had enough effect on the tumor to stop the activity within it????
It looks like the answer is…YES!!!!!
She does, in fact, begin wiggling her finger, which is a big deal. She is also on steroids at this point, but I don’t know if that’s relevant. She also is doing horseback therapy, which she enjoys immensely. (I have seen as I’ve researched these patients and totally understand…animals can be such a comfort!) They celebrate Sahara’s 13th birthday in high style and with a deep appreciation of the time they have with her. In August, Sahara is feeling good enough to go see (as in, “go-hang-out-with-him-before-a-show” see) Rick Springfield, who seems to be passing through.
By the time many of you read this, we will be well on our way to the west coast, where we will begin the next chapter of Sahara’s journey. After searching for what seemed like an eternity, we finally found the surgeon we’ve been looking for…the one who is going to take that evil tumor out of our sweet girl’s head.
Her surgery will take place on Wednesday, September 12.
They’ve stopped the IV, incidentally. In an update we hear:
We are still waiting on an array of pathology to come back…lots of tests are being performed on the tissue to determine exactly what kind of tumor has been haunting her for 15 months. We know what it is NOT…it is NOT a glioblastoma multiforme, grade 4. I won’t go too deeply into how I feel about that right now…but suffice it to say that I am LIVID at thoughts of an initial misdiagnosis, continued misdiagnosis, the wrong clinical trial…chemo and radiation geared toward GBM…a tumor that was called “inoperable” keeping residence in Sahara’s head for well over a year…it makes me sick. Absolutely SICK. Shannon and I keep shaking our heads…and hating all of this…but now we must continue doing what we have always done…MOVING FORWARD. With more hope now than ever!!!
We got the final word on pathology today. Sahara has a ganglioglioma with anaplastic features. What a mouthful that is. It is a grade 2 tumor. Although we were hoping it was a lump of dead nothingness, it’s still FAR better than the grade 4 diagnosis she was given originally. Normally, a ganglioglioma is a grade 1 tumor, but in Sahara’s quest to be different, hers has every type of cell imaginable floating around in it. Dead cells, slowly dividing cells, and rapidly dividing cells. The presence of these bumps it up to grade 2. We are hoping to have a new plan of action in place by the end of the week […]
The interesting thing, I think, is that if the initial diagnosis was wrong, would that not mean that the slow growth was in all likelihood NOT due to the treatment that Burzynski was giving her, but due to the nature of the tumor that they were facing? These are the types of false positives that get weeded out in large scale, Phase III clinical trials, but which Burzynski seems unable to complete. Nonetheless the family seems to give Burzynski credit for…what exactly? It was a slower-growing tumor:
Month after month, MRI after MRI, Sahara’s tumor, which was initially incorrectly diagnosed as a glioblastoma multiforme stage 4, did not appear to me to have the same characteristics and shape of those I had seen when doing research online. It wasn’t growing rapidly…it wasn’t spreading through her brain like the deadly “fog” of a gbm. It was round and fairly well-defined. Then, one day back in April, after going over her scans, one of the radiologists at the Burzynski Clinic in Houston asked one of our doctors there, “this is a low-grade tumor, right?” Dr. Samuel relayed this to me, which only made me suspect even more that it was NOT a gbm. (I will always be grateful to the people at the Burzynski Clinic…antineoplaston therapy bought Sahara nine months of precious time.) The conversation gave me the encouragement I needed to begin searching for a surgeon…THE surgeon.
So, Burzynski gets the credit for a misdiagnosed slow-growing tumor.
Then there is an abrupt end to the story. In fact, I was going to gloss over the ending since Sahara was no longer on ANP. I was content to leave the story with the excitement from the family. That excited post above was from November 4th. On the 5th, no words:
I’ve started this blog at least ten times and hit the delete key, unable to find the words that convey what is in my heart, and what is about to take your breath away.
Sahara died this evening.
She went peacefully, in her sleep at home, after a full day of hard work at physical therapy. One moment, on earth…the next, in heaven. Gone in a breath, in a heartbeat.
The poor kid. She and her family fought hard and never gave up. I’m very sorry.
For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us. As always, visit patients’ websites for the full story from their perspective.