Kyle turned 10 years old in July.
Update, June 2000: Kyle is now on antineoplaston capsules, and is playing baseball again!
In June of 1996, my son Kyle began to have shooting pains that started at his buttocks and penetrated to beneath his knees. As weeks passed, his pain worsened. It took many doctors one month to discover Kyle had two tumors in his spinal column. He had surgery 2 days after his 7th birthday. The surgeon removed 100% of the tumors, which were cancerous (myxopalliary ependymoma). The oncologist said there was an 80% chance the tumors would not recur and suggested that Kyle forgo radiation or chemotherapy.
In July of 1997, Kyle began having shooting pains again. His MRI revealed that the tumors were growing back. However, not only were they in his spine, but they had spread to his brain. This time, the oncologist wanted Kyle to begin radiation therapy immediately. However, it only offered a 30% to 40% chance of prolonging his life for a while. Also, when my husband and I talked to the radiation oncologist we were horrified by the side effects (lower IQ, hair loss, growth retardation [his spine would not grow any more], hearing loss, and more). There was no way we were going to put him through that.
When we heard about antineoplastons, I was skeptical about Dr. Burzynski. I thought that he might be a quack just out for people's money. However, through the Internet I was able to get in contact with the mother of one of Dr. Burzynski's patients, Juliet Freitag. At the time, her daughter had a brain tumor and antineoplastons were helping.
After speaking with Juliet, I felt more secure about our decision to put Kyle on antineoplastons. At the end of August 1997, we flew to Houston. A vascular surgeon there inserted a catheter in Kyle's chest. It is used to infuse him with antineoplastons for 2 hours at a time, every 4 hours, around the clock.
Kyle seems pretty good emotionally about having to carry a back pack full of medicine and a pump. We disconnect him when the medicine is not infusing, allowing him to run and play like other children. Some of the side effects he has experienced are weight gain from the Decadron (steroid), nausea once in a while in the morning or when we are trying to increase his dosage, excessive thirst when the medicine is infusing, and occasionally a rash. As you can see, none of these side effects are damaging to him.
As of May 1998, Kyle has lost some weight and is able to play baseball. He is one excellent ball player and makes some amazing catches. Also, he is becoming a terrific reader.
The tumors in the brain have shrunk by 7%, and the spine tumors remain stable. Kyle is on a higher dose now, so we are hoping the next MRI will show a big reduction. I know that through prayer God gave us knowledge of Dr. Burzynski's treatment. I am so thankful we made this choice. It was the best one for our son.
If you ever want to ask me any questions, feel free to call. You can get my phone number from Dr. Burzynski's office.
Submitted by Beth Ledy to the Burzynski Patient Group website.