Juliana was a week shy of four-years old in 1996 when she was diagnosed when she was first diagnosed with medulloblastoma. Juliana received surgery, radiation, and chemotherapy between then and 1999, and she improved greatly. In 2000, she was back being homeschooled and the family was counting the months until they could declare her cancer to be “in remission.”
Unfortunately, the cancer returned in January 2001. She underwent additional surgery on April 9, 2001, which was projected to extend her life by 6-18 months. The family, however, looked frantically for something more. In May 2001, we hear:
May, 2001 – After extensive research and learning we selected a safe and effective experimental treatment. Unfortunately, our health insurance did not cover this type of treatment. It is also difficult to qualify for this treatment due to FDA limitations. Repeating already failed conventional treatments like chemotherapy and radiation were not desired by our family. These poison-based treatments have very drastic, often permanent side effects on children. Likely side effects are: loss of hearing, vision and hair, mental retardation, organ damage, spinal growth deficit, weakening of joints, and secondary cancer. Minor permanent side effects are already present in Juliana due to previous treatment.
They are going to the Burzynski Clinic. It is very sad but completely understandable that the family considers Juliana’s treatment to have failed; they are, after all, exactly where they were when the whole ordeal began. Nonetheless, she has been with them for years now because of conventional medicine. Extending a child’s life a few years doesn’t seem like much when the prospects of a happy adulthood seem erased.
The family is gearing up to raise funds for their daughter, because unlike other experimental treatments, Burzynski’s antineoplastons are never free. Oh, sure he doesn’t charge them for the chemotherapy itself (ANP is dangerous chemotherapy) but patients report extravagant bills for the incidentals of care. (For an example of this insane and unethical practice, see Supatra A.’s story.)
“The first time around, we thought we went through hell,” said [B], whose daughter Juliana has medulloblastoma — an aggressive childhood brain tumor. “It was a big roller-coaster ride. The waves have become smaller as the years have gone by, but now we’re back on that roller-coaster again.”
[B] would like to see Juliana receive a treatment that has been popular in Europe for decades and is slowly gaining acceptance in this country.
The medicine, antineoplastons, teaches the immune system to recognize and attack cancer cells. Initially, it is taken intravenously and in pill form later.
The medicine’s only side effect, [B] said, is increased levels of sodium, which cause patients to drink more and urinate more frequently.
This is not remotely true. 1) Antineoplastons are still deemed neither safe nor effective by the FDA. 2) The Burzynski clan has not identified a molecular target that the treatment is supposed to work on. 3) Lack of ANP has not been identified as a contributing factor to any cancer. 4) I’ve never heard that ANP teaches the immune system to attack cancer cells, and no mechanism by which it possibly could has ever been posited. 5) The increased sodium level is one of many possible side effects associated with the treatment, including interminable port infections and strokes in children (see Elizabeth K and Haley S’s stories). According to ANP trial consent forms that one former patient sent to this website, the side effects range from:
Severe or life-threatening increased sodium concentration in blood;
Risk of death;
Difficulty arousing, coma;
Severe or life-threatening low potassium concentration in the blood;
Decreased levels of consciousness;
Low platelet numbers requiring transfusions;
Severe fatigue interfering with activities of daily living;
Fever greater than 104C;
Frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter;
Decreased white blood cell count;
….and so on. There are three pages of side effects in the consent form. In light of this, it seems unbelievable that Juliana’s parents, if they were properly informed about what they were getting into, would tell the AJC:
“There’s no throwing up, no need for a feeding tube in her stomach, no loss of blood cells and no hair loss,” [Mr. B.] said.
Anyone who suggests that antineoplastons is non-toxic is uninformed. Many patients end up on feeding tubes while on Burzynski’s treatments. (See Supatra again, Leo D., John D., Bursynski employee and patient Paul L., and Evan W.)
At this point, it seems Juliana’s father had lost his job and could not afford the projected $16,000 initial 3 week visit to the Clinic, and he appeals for funds. (Cost overruns can apparently accumulate silently, and the patient gets whacked with a bill and heavy debt.) Meanwhile, his daughter is losing control of her muscles, control of her left eye, and her gait.
The family hopes that by end of the month they will be in Houston starting treatment.
7/10/2001 – We are very excited to share some really good news with you. We just received the results from Juliana’s last MRI from 7/9/01. The last line of the report reads: “There is no evidence of residual or recurrent tumor seen.”
This is based only on the MRI pictures. Which means that there are no big visible tumors, but we still have to continue the treatment and hopefully completely eliminate all remaining cancer cells.
Little by little we are getting used to the routine of our new life. Mom is not only home-schooling any more but also became a 24 hour nurse. Juliana needs to be connected to her IV medicine pump six times a day, around the clock.
Our insurance company started to reimburse Juliana’s providers but only at a rate of about 35%.
This is surprising because most insurance companies won’t go near Burzynski.
[…] Juliana was admitted to ICU due to an unexpected, hard to control seizure. Now, two days later she is doing better but very week. Please pray with us for fast recovery and good decisions by her doctors. She spent most of this day just looking around and recovering her normal breathing rhythm. On her last MRI there are no identifiable tumors but a few tiny nodules that may just be part of the post operative scar tissue. Hopefully that’s all they are.
In a few days, Juliana’s family reports that she is reaching her maximum dose of ANP and is experiencing weakness. Further, she is experiencing rashes and
On Sept 18, we hear that she is looking good, but the family can’t exactly say, only hope, that she is getting stronger and healthier.
Juliana’s birthday is just a few days away on September 2*. but the party will be on Saturday the 22nd. She is feeling great and looking good, I hope this means that she is getting stronger and healthier. The last MRI 9/4/01 concluded no change, “stable” condition.
And in November, Juliana’s insurance company stops paying for Burzynski’s treatment:
11/16/2001 – Dear friends. An official denial was sent to us today from our HMO that they refuse payment to Juliana’s providers. While we are trying to figure out the reasons and how to appeal, one of the hardware suppliers already stopped shipments. We have supplies only for a few more weeks.
12/14/2001 – The last MRI from two weeks ago revealed some sad news for us. A new tumor was discovered in the area where the original tumor started five years ago. Juliana’s doctor recommended that we raise her dose by about 25%. Unfortunately our insurance company has blocked payments to our supplier and we can’t continue the treatment.
Juliana is still alert but tired and takes several naps a day.
What indication have we had that the tumor has responded at all to the antineoplastons up to this point? There is no ringing success anywhere, nor even the illusion of progress. I don’t know what would justify increasing the dose of a treatment that seems not to be doing anything.
It’s hard to see what treatment she is getting, perhaps some palliative care. The record becomes more attenuated after they are off ANP.
03/30/2002 – Welcome back. Please forgive me for not posting any updates for the past many weeks.
To some of you it is not clear where Juliana’s condition stands these days: Because the last MRIs in December indicated returning tumors and our insurance company paid very poorly, the medication was discontinued. At that point her doctors could not predict anything specific, but they said she could have a few more weeks maybe two months before the major functions will be effected.
Since than she lost some of her balance and gained a few pounds. These changes make it difficult for her to walk more that 20 minutes at a time, so she likes to stay home and watch videos from her extensive collection. Despite of the walking problems, we managed to spend three wonderful hours at the Atlanta Botanical Gardens last week, where I pulled her in a little red wagon while she was taking pictures of hundreds of beautiful orchids.
At this point it is a waiting game, it seems. But the outcome seems to be clear. Luckily, the family has several more months with her, though I don’t have a good sense of how she is feeling. It seems that she is fading slowly over months and months. She passes away well over a year later, on 11 Sept 2003.