Apparently, Justin’s arm had been very weak before treatment. On February 22, 2006, Justin began 6 weeks of radiation treatment at Brigham & Women’s Children’s Hospital, and the next day he began his chemotherapy, a new drug called Temodar. On the 28th, he was able to move his right arm by himself, a great relief for the family. On March 16th, he was sick from the chemo for the first time, but he was doing very well overall, which is good to see. As you trace these stories, you realize how important the good times in fact are. As an adjunct to therapy family is seeing a naturopath and he’s on what the family calls “homeopathic medications ruta graveolens and calcarea phosphorica.” These pills can have had no effect on the tumor because homeopathy is placebo. (It was recently called “witchcraft” in a report by the British Medical Association.) The family is without fault, of course. Anyone who would recommend homeopathy for cancer and then sell it should be publicly shamed. On March 30th Burzynskienters the picture:
7 more radiation treatments to go! Chemo will be ending at the same time, and Justin will have what’s referred to as a four week “rest period.” During this rest period, the family will go on their cruise, and Jeff will be traveling to the Burzynski Clinic in Houston, Texas to meet personally with Dr. Burzynski to get more information about antineoplaston treatment so that a decision about the next step of Justin’s treatment can be made. Jeff has spoken with five different families across the US who have children fighting the same cancer that Justin has. Two of them are Burzynski patients. Jeff is learning a lot from these parents and from various online support groups.
Justin finished radiation on April 11th. By the 23rd of April, Justin’s father, Jeff, has been to Houston and has met with the Clinic. The family reports what they were told there, and I quote at some length:
Justin’s dad Jeff returned from his trip to the Burzynski Clinic in Houston, Texas. The meeting with Dr. Burzynski has resulted in the family feeling encouraged and hopeful that this treatment could work for Justin, and they’ve decided to pursue it. Dr. Burzynski has treated 65 patients (under 25 years old) with brain stem gliomas with his anti-neoplastons gene targeted therapy (ANP) in FDA-approved clinical trials since 1990. 23 of them were classified with newly-diagnosed tumors. (The other 42 patients had recurrent tumors and therefore aren’t representative of Justin’s case.) Of the 23, 26% had complete response to the therapy, 9% had partial response (at least 50% shrinkage of the tumor) and 26% remained stable. In the other 39%, the disease continued to progress. These success rates are considerably better than those associated with conventional chemotherapies, which offer only a 10% survival rate after two years with newly diagnosed diffuse brain stem gliomas (DBSG.) Dr. Burzynski’s longest survivor with DBSG is currently 18 years post-diagnosis (this particular patient went through the same conventional treatment, radiation and chemotherapy, that Justin has.) He also has 8 patients now living 9-12 years post-diagnosis.Because ANP success rates are higher on newly diagnosed tumors, starting Justin on this treatment while his tumor is less active seems like the best course of action. Short term side effects of ANP are minimal (sodium level increase, potassium level decrease, skin rash in 5-10% of patients, decrease in platelet and white cell counts in 5% of patients.) These side effects are considerably less significant that those associated with traditional chemotherapy, and there are no known long term side effects associated with ANP, since it is made up of naturally occurring compounds, amino acids, and acid derivatives that are already present in the body.
You can imagine that this might give the family some hope. The problem is, of course, that Burzynski is in no position–NO POSITION–to give out numbers, as he has never published a single study of any note that has demonstrated efficacy to the satisfaction of his peers. I would suggest that the lack of any studies (and the fact that there are so few people alive after a diagnosis that leads them to Burzynski) is the reason why there is no information about long-term side effects. Most disturbing from my perspective, however, is that Justin’s next MRI, an essential part of his treatment and monitoring, has been pushed back to June 7th in order to make him eligible for the trial. The monitoring that this family, doubtlessly in good faith, delayed for the sake of Burzynski’s trial, has never been published. None of the trials that he has charged people for the privilege to participate in has led to a single published Phase III clinical trial. In decades. Decades.
Like so many other families that I have seen researching this site, Justin’s lived in Houston for 3 months while at the Burzynski Clinic. (Burzynski is forbidden from shipping his unproved chemotherapy across state lines, though that makes you wonder how Justin’s received continuity of care in New Hampshire after he left Houston.) According to the 18 August 2006 edition of the Lowell Sun,
The [B] family has found some hope in a clinical trial for an experimental molecular treatment that Justin has been enrolled in at the Houston-based Burzynski Research Institute.
[B] said there has been a marked improvement in Justin since. But the treatment, as well as Justin’s medications and specialized nutritionist, constitute a significant financial burden on the family, [B] said.
The latest in a series of fundraisers to help offset the medical costs will be held tomorrow in Tewksbury, courtesy of a group of [B] family members and friends.
A multifamily yard sale will take place throughout the day at the United Methodist Church, which is located on the corner of Main Street and South Street. All proceeds from the sale will go directly to the Justin [B] Fund.
A comedy night at the Tewksbury Country Club and a cookbook are also planned for later this year.
TEWKSBURY — The Tewksbury Country Club will be hosting a series of comedians on Thursday, Nov. 2, as part of a fundraiser called “A Night of Laughter for Justin.” Any money raised at the event will help the family of Justin [B] financially support 6-year-old Justin’s battle with diffuse pontine glioma, an incurable brain tumor.
Justin, who lives in Litchfield, N.H., is involved in a clinical trial for an experimental treatment at the Houston-based Burzynski Research Institute. Jeff [B], a Tewksbury native, said there has been a marked improvement in his son since. But the treatment, as well as Justin’s medication and specialized nutritionist, are expensive.
After a little hiccup regarding his shunt in mid-May, the family is moving along tickety-boo, and Justin bounces back. I’ve learned through this that every little up and down is given MAXIMUM ATTENTION when a child is ill. I can’t imagine the emotional exhaustion it must invariably lead to. He’s a little nauseated at times, but the family is pleased with his progress, though always, always on alert.
On June 8th, following the first MRI since radiation, Jeff, Justin’s dad, exults: “Great preliminary results on Justin’s MRI !! It appears that the mass is about 25% smaller on the scans and that the bleed has almost entirely dissolved! YES!!!!!!!!!!!!! Did anyone have any doubt after Justin’s progress these last few months? I DON’T THINK SO!! I’ll give you all a more detailed update soon.”
Radiation can shrink tumors up to 6 months after treatment, so in combination with a few more months of improvement there, the upcoming ANP treatment through Burzynski, Dr. Banerjee’s Homeopathic Ruta 6 protocol and the Naturapathic supplements/botanicals, we’re attacking this tumor from all sides.
They are doing everything that they can think of. They are throwing the kitchen sink at the tumor. Come to think of it, I’d like to throw a sink at Dr. Banerjee for giving placebo to a child with cancer. We also learn that the family is now confirmed for the ANP “study.” They have also been the recipients of some kindness, a family is loaning the B family a house and minivan for a few weeks while they are the Clinic.
Justin has a hard time starting on ANP. His white cell count drops and he is taken off of them until the doctors figure out what’s causing that. He’s back on the treatment on July 4th, and he suffers that ubiquitous side-effect of ANP:
Justin’s first night back on ANP went o.k. with the expected broken sleep due to 5-6 times waking up to pee. He complained a few times about headaches, but they didn’t seem severe and went away on their own. All of the symptoms are normal and we hope that his body will adjust over the next few weeks and things will get easier for him.
The family is excited when preliminary MRI results come back on Aug 8, as the tumor appears to be stable. A few days laters, the Burzynski Clinic feeds the family the following, familiar line:
Here’s a couple of specifics of what they see on the MRI…the scans show significantly less enhancement (cancer cell growth) around the tumor when compared to the June MRI (approx. 8 weeks ago.) Within the tumor itself a cystic formation is observed (liquid/necrosis) vs. a more solid tumor on the June scan. As the tumor begins to break down, Justin’s body will begin reabsorbing it. This is slow and careful process. As Dr. Roja states, it took years for this tumor to grow, it’s going to take a long time for it to go away as well. We say, as long as we have our beautiful boy we don’t care how long it takes!
I usually write these as I read the accounts, so you are getting my first reaction as I go through these stories. And so often we hear of a patient who has a tumor dying from the inside, which is not how tumors tend to break up when being treated with chemotherapy (ANP is chemotherapy by any definition). Over and over on this site, I see the same story–repeated by parents who’ve been to the Burzynski clinic over decades–“The tumor is breaking up on the inside. It will be reabsorbed.” I can’t say what this is, but you know, it sounds so much like the other stories, like the one of Amelia S–where the cyst seems to have indicated that the tumor has outgrown its blood supply–that little sirens go off every time I see someone say that now.
At about the same time, Justin’s port needs to be changed because it is permanently blocked. And then we get a little tase of Justin’s spirit:
Justin has been naming the various tubes coming out of him (through all this, you gotta love that sense of humor of his.) His new catheter is named, Mac. “Mac the Broviac.” What can I say. His old port was just called “porty,” so it’s definitely more original this time around.
Following that surgery, his 6th, and following the next MRI on Oct 10th, it sounds like perhaps those little sirens I was hearing a few minutes ago were real:
Yesterday Justin had his second MRI since beginning Phase II Antineoplastons. As always, he handled everything like the champion that he is. Like the champion he will always be. While Justin was recovering from the anesthesia, we met briefly with one of the radiologists. After introductions, the first words from her mouth were “the tumor is larger.” Of course, your heart goes in your throat when you hear this. After a more detailed description, it seems that the cystic formation that is within the tumor is what is larger. This is what is making the overall measurements of the tumor to be larger. Perhaps this is again what Burzynski expects to see? Anything larger in that small area makes us worry, though. The enhancing area (the cancerous portion) is actually smaller than on the previous MRI (August.) This is very good news. Hopefully we will hear from Burzynksi by tomorrow with their official report. After all, they know what they want to see. Hopefully the news from them will be encouraging. I’ll post again when I receive the news.
Justin has been showing some symptoms lately which have us worried. He’s been drooling a little and his speech isn’t as clear as it was in recent months. He seems a little weaker and not as steady on his feet, and he’s been needing a little more help with walking lately. Of course, some of these things could just be our paranoia as any change we notice we naturally get nervous.
It seems that the doctors at Dana Farber are concurring with the Burzynski report, that the tumor is dying off, and aspiration seems to be an option that everyone is mentioning. You should check out Jeff’s whole post.
At Halloween, Justin goes trick-or-treating, but he’s in a chair being wheeled around for most of it. I was not aware of this. They are keeping an eye on the cyst. The next report, following a scan right before Thanksgiving, shows the cyst is still putting pressure on the brain, and Jeff reports that some of Justin’s symptoms have gotten worse.
On December 2, Mr Mike’s Restaurant held another fundraiser for Justin, according to The Sun:
Fundraiser for boy, 6, on Saturday
HAVERHILL — Mr. Mikes Restaurant is holding a fundraiser on Saturday for Justin [B], a 6-year-old boy who is battling diffuse pontine glioma. Justin is the son of Tewksbury native Jeff [B].
The restaurant will donate 10 percent of its sales that day to the Justin [B] Fund, which helps the family offset cost of Justin’s medical care.
The next several months are in a sort of holding pattern, it seems. Instead of substantial updates about Justin, wow, such a horrifying list of children with similar brain tumors. Families seem to network compulsively when they get bad results, and this is a good thing. It’s like they have an extended “cancer family” to put it crudely, but they support one another and take solace in knowing that they are not alone. You can also see parents trying to disassociate the outcomes of the other kids with those of their own children, but you know they can’t. One phrase I’ve learned by researching this topic is “earned their wings.” It’s heartbreaking.
On March 5, 2007, we hear that new growth has been seen in several places on the most recent MRI. Luckily, he hasn’t been showing any other new symptoms. You can see an interesting comparison between the Burzynski interpretation of the scan and the Boston Children’s interpretation.
In April, we learn that Justin has gone deaf in one ear and at the end of the month he comes down with bronchitis. When that clears up (by mid-May), he is good to go for another MRI, but he seems to have problems swallowing and his speech is difficult to understand. The final results suggest that the tumor is active again, but the size seems to not have changed much. Burzynski orders more ANP.
Justin’s condition is gradually becoming more severe, as his father reports on June 8th:
Justin continues to struggle with his speech and is talking less each day. He seems to be the best in the morning when he wakes, so we’re encouraging him to talk as much as he can. We don’t want him losing faith and stop all together. His tutor and speech therapist are working on different methods for us to communicate with him such as message boards, picture boards, simple sign language, etc. We’re just going to do our best to battle through this and pray that it improves as the treatment breaks down the new cancer cells. His dose of the Antineoplastons is the highest it’s been at 1056 ml bag 1, 135 ml bag 2 each day. It just HAS to work, that’s all there is to it. Unfortunately, Justin is also having trouble doing his favorite thing in the world, video games. His right hand has been tighter which makes his thumb kind of curled making slip off the buttons. We need to find him a one handed controller of some sort. They must make joysticks for people that are handicapped, right?
Justin, poor kid, has been diagnosed with asthma and it earns him another trip to the hospital. He’s basically immobile now, but they have found him a one-handed joystick so he can continue playing his favorite video games.
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 the patients’ websites for the full story from their perspective.