Treatment

On February 28th, Jack and Mariann sat with family and friends in a lounge outside the operating room waiting to see Dustin, waiting for the surgeon to give his report. Dustin had medulloblastoma, a highly aggressive form of cancer. The doctor had removed 75% of the tumor but was unable to get the rest in the folds and crevices of the brain without doing damage. Dusty would have to go to a larger hospital for further treatment.

In the week that followed, Dustin regained enough strength in his incised neck muscles to turn his head and hold it without support. He started walking again. Doctors and nurses were impressed with the progress in his motor skills. However, as Dustin and his parents left for the next hospital, the sober expression on the nurses’ faces showed their experience with patients having this diagnosis. The prognosis was not good

In the days that followed, Jack and Mariann observed other children being treated for cancer and learned what the doctors as this hospital had to offer Dusty. Radiation would certainly cause mental retardation and was not recommended at his age but would be done if chemotherapy failed. They were given information on chemotherapy. Dusty could be part of a study, with a computer picking the drug he would be placed on. Among the risks involved were hearing loss, stunted growth, learning disabilities, bladder and kidney damage, sterility, and leukemia. There was a 20% to 40% chance the treatment would work.

Jack questioned the doctor as to how many patients had been helped by this treatment and if there was anyone they could talk to who had been through it. The doctor said he didn’t know and he’d have to check the records. This raised questions in the minds of Jack and Mariann. Shouldn’t a doctor know if the procedure he was using had good results?

Choosing an Alternative Therapy

Jack and Mariann also were given the case histories of seven patients studied by the National Cancer Institute. These patients had been treated with a nontoxic therapy called antineoplastons discovered by Dr. Stanislaw Burzynski. Although all seven showed a reduction in tumor size, Jack and Mariann were encouraged to continue with the oncologist at this hospital because antineoplaston therapy was not yet FDA-approved. When the Kunnari’s hesitated to sign the consent form, the success rate of the chemotherapy offered by this hospital was increased from a possible 40% to 80%.

Jack and Mariann left for home with an unsigned consent form amid threats that court action to remove Dustin from their home would be taken if they did not consent to treatment. Mariann’s brother, a doctor, told them the threat was not an empty one. He feared that their other children could be taken as well.

As the weeks passed, Jack and Mariann learned all they could about other treatments. They were surprised at how many alternative treatments there were, and how many cancer patients had been helped by them. The treatment they decided to try was the nontoxic antineoplastons being studied by researcher Dr. Stanislaw Burzynski. He had been having good results with brain tumors and other forms of cancer using substances that occur naturally in the human body. His credentials, laboratory studies, and case histories were impressive.

April of 1994 found Dustin and his family in Houston, Texas, visiting the Burzynski Clinic. Dusty was too young to be part of Dr. Burzynski’s study. However, in response to the pleas of Jack and Mariann, and out of compassion, Dr. Burzynski agreed to treat Dusty. They were all confident that this treatment had a good chance of helping him.

Dustin was equipped with an IV pump that he carries around in a back pack while he receives the antineoplastons intravenously. Jack and Mariann were taught how to program the pump for specific treatment times and dosages. They learned sterile technique in the care of the IV tubing and have learned how to deal with emergencies. (Being a rough and tumble boy, Dusty’s IV line has burst twice, needing repair.)

When Dustin started antineoplastons, Dr. Burzynski told the Kunnari’s he would stop the treatment if there were no positive results on the first MRI, which would be taken after 6 weeks of treatment. To their great joy, the 6-week MRI showed no evidence of tumor. Every 3 months, the Kunnari’s make a trip to Houston for Dusty’s checkup and to get more medication. After 1 year on antineoplaston therapy, a tumor once again was seen on a follow-up MRI, showing the aggressiveness of medulloblastomas. Dusty’s dosage was increased, and he continues to have periodic lab tests and MRIs done.

Dusty has few side effects; no hair loss, nausea, or weakness. He has had occasional bouts of diarrhea as the tumors have broken up, and has had lowered white blood cell counts. Dusty’s parents have found that when he drinks Essiac tea (Herbal Essence) regularly, his white count increases.

As Dusty visits the hospital where he had surgery and the Burzynski Clinic, he is quick to greet old friends. Medical personnel continue to be amazed with his robust health, energy, and outgoing personality. He has been an inspiration to many who have come to know him.