For several months Braiden (1.5 years old at the time) had been having eye problems and balance issues. These issues were not major, and did not become a big concern of ours until Braiden had what we thought was a seizure in December of 2006. In the months following this “seizure”, several local doctors repeatedly diagnosed Braiden with having an eye disorder called Strabismus and wanted to have him fitted for glasses. We researched Strabismus ourselves, and it just didn't connect with us that this was the source of Braiden’s eye and balance issues.
On May 24, 2007 we frantically called CHB and informed them that Braiden's balance had been quickly degrading, and we felt that there was much more to Braiden’s eye and balance problems than needing prescription glasses. We were scheduled for an immediate appointment at CHB Ophthalmology.
Shortly into this eye exam, the appointment came to an abrupt halt and we were directed to the emergency room for a CT scan. The Ophthalmologist had observed that Braiden’s optic nerves were being pressed into the back of his eyes. They stated that this was an indication of Hydrocephalus, which is a buildup of fluid in the skull that causes pressure behind the eyes. Shortly after the CT scan, a group of doctors entered our room and greeted us with handshakes. We knew that what we were about to hear would not be good, especially since I had spoken with these same doctors shortly before, and no handshakes were exchanged then. We were told that Braiden had a 4cm mass on his brain stem, which Pathology reports later classified as a Junior Pylocitic Astrosytoma, brainstem glioma. Not only did they tell us that this was one of the worst spots for a tumor to appear, but they then said that he had only a fifty percent chance of survival.
Within days, Braiden was in the OR undergoing a 13 hour brain tumor resection surgery. Months later he had a subdural shunt installed. Over the next year, he had an MRI every 3 months in which they all showed the tumor growth. It was when it reached its original size that we were transferred to Dana Farber for Chemotherapy.
To make a long story short, I began to deeply research Vinchristine and Carboplatum, and became very disturbed with my findings. Ultimately, we refused Chemotherapy, as two days prior to Braiden’s first dose; I finally came across a legitimate appearing treatment that the Burzynski Clinic offers. We showed up for Braiden’s’ first chemotherapy appt, but not to start, instead tell them that I had scheduled flights out of Boston to Houston to consult with Dr. Burzynski. I was told that they’ve had patients go there, and they all end up coming back, so I told them I would do the same if needed.
I couldn’t pass up this genetic targeted treatment, regardless of all the skepticism I found on the internet. What it all boiled down to was that everyone knew going into chemo that it was not the answer. With all the horrible side effects and diminishing of quality of life involved, how someone in my shoes could not attempt Dr. Burzynski's treatment that has minimal side effects, if any, before trying chemo is beyond me.
Shortly after starting Antineoplaston treatment the things started to turn around. The once continuously growing tumor became stable within the first two months, followed by a year of bimonthly MRI which all resulted in significant decreases in tumor size and enhancement. All while Braiden was nearly the same happy boy that he was before. To this day, if it weren’t for the backpack that he carries which contains the Antineoplaston treatment, you may not know Braiden has any medical problems at all.
Of course, I give much credit to the professionalism and genius of the Burzynski Clinic, but I give all the credit to God for the many wise choices I was able to make along the way of this treacherous road, under such stress.
As of June 2011, Braiden is enrolled to start Kindergarten and we continue to pray for the arrival of the day that we get the phone call from the Burzynski Clinic saying it is safe to stop treatment.