|Kass with Dr. Burzysnki|
|Our day's itinerary that took almost 7 hours|
Consultation day! We rose early in anticipation for the big day since we had a 45 minute drive ahead of us from where we are currently staying with friends that I haven't seen since I was a child when I grew up in Panama. Completely thankful for their hospitality and generosity!
As we drove up to the clinic and parked we all nervously looked at each other with scared, but inquisitive looks in our eyes. My hands were shaking as I grabbed all of Kassidy's medical records and notes I've kept since the beginning of all this and we all proceeded to go into the big glass building which we were met by a doorman with an accent and he welcomed us to the clinic.
We were a couple minutes early so we were instructed by a very polite lady to wait in the waiting room and she handed us an itinerary of what the consultation would entail and explained a little bit about waiting times, procedures, and told us about the cafeteria on premises.
The appointment started 11:00am sharp and we walked out at 4:45pm. Long day! They first took Kassidy's vitals, which were all great. Then Dr. Szymkowski, interviewed us and discussed Kassidy's medical history to make sure all the information she had was accurate so she could discuss Kassidy's case with Dr. Burzynski before he came in the room to discuss a plan of action. After what seemed an eternity, Dr. Burzynski, Dr. Szymkowski, and Dr. Weaver came in and introduce themselves to all of us and started to explain a little more about the two types of treatments. How targeted therapy would target 3 genes and the clinical trial could target up to 100 genes. Her biopsy slides would be sent to a laboratory in Phoenix, AZ for testing to see what type of genetic makeup her tumor is made of. They did this so they can isolate which genes are causing the tumors and individualize her treatment more. They would like to start her on the clinical trial antineoplaston and in the future also include the targeted therapy to speed up the process of reducing the tumor. Dr. Burzynski did say that since Kass's tumor is slow growing that it would take 1 1/2 to 2 years for treatment, which is a long time for Kass. She was hoping it would only take a couple of months so she could get back to a normal life.
She will have to have another MRI, small surgery to install a port, and wait for final approval from the FDA to make an exception since she has not failed radiation or chemo therapy which is one of their requirements. The doctors are hoping since the tumor is so rare they will make an exception. Kass and I will be required to stay here for 3 weeks to learn the process and Kassidy will have to go to therapy everyday including Saturdays and Sundays while we are here. Infusion will take about 2 hours everyday and I will be taught how to administer and take care of the port. She will be closely evaluated every week to watch how she reacts to different doses.
After we discussed treatment we met with a financial counselor to get an idea of what it all would cost. Can you say WOW! If we are accepted into the clinical trial all medication will be free, but a cost of management fee and supplies of $7,600 a month for the duration of treatment. She did explain that they would try to get insurance to pay some costs, but not to count on it.
Kass then had some lab tests done and blood samples drawn for testing and all of this followed by a physical which she passed except for slight of bilateral nerve test. This concluded the consultation and we were told we would know in a few days if Kassidy is accepted.
Meanwhile we will hope! One day at a time......