After multiple flight delays out of Salt Lake we finally arrived here in Houston. I think we fell in bed at 4:30 am. Ughh. Monday I had a physical and consultations with the doctors. They were amazingly nice. There were two doctors, Dr. Wang and Dr. Gottschalk who spent over an hour with us explaining the procedure, what the side effects might be, what the hoped for outcome might be, what other studies were beginning that might be applicable to me. They were so good to us. I can't think of the last time a doctor spent an hour talking with me. Wow!
I passed the physical with no problems and they were thrilled to have me here to participate in their trial. I am the second patient to qualify for the study. We didn't really asked how patient #1 is faring, it isn't relevant frankly. Anyway, they told us to return on Tuesday at 9:00 am to start the infusion.
Monday after we left our consults I had a call from a Dr. Marx in Miami. He is a very famous oral surgeon. I had sent him an email with pictures of my wound and asked if he could help me. Reconstructing my face is no small matter. We have talked to multiple doctors in Utah and they all tell me how incredibly complex my reconstruction will be. Anyway, he called and talked to me for over 30 minutes. He said that treating advanced osteoradionecrosis (that is what I have, severe radiation burns that have destroyed my jaw and my skin on that side) is what he does for a living. He felt that I was very treatable and talked at length about how he would do it. We have an appointment in Miami on January 27th to meet with him. After we got off the phone JoLynne and I just sat in the car and wept. Just before this started JoLynne had an impression. "Sit down, buckle up and prepare for quite a ride" She felt like long prayed for miracles were about to begin.
Tuesday we showed up not knowing really what to expect. Usually my chemotherapy infusions take all day. So, there were three doctors and about that many nurses there to watch or help. Finally they showed up with this really little syringe. It had maybe 2 cc of golden fluid, less than 1/2 teaspoon. There was lots of paper signing and witnessing etc. Then the infusion. I think it took like one minute. JoLynne asked later how so little fluid was going to be enough to do the job. The doctors told us "If this goes as planned those little T-cells will seek out your tumor and when they find it they will begin to replicate themselves like crazy until there are enough to do the job"
With immune therapy they hope to boost your immune response. In a few cases it goes overboard and initiates something called a cytokine storm. Basically your immune system goes crazy and you die. So, they were watching me really close. I had my own nurse for the next four hours, she basically never left the room. When they genetically engineered these cells they built in a biological cut off switch into the genes. If everything is going wrong they can give you a drug that turns off all the infused cells. The doctor told us that the cut off switch was embroiled in a patent dispute and that technically they couldn't use it because of the court battle. But, he said, "I have the drug here in the hospital and if you start going downhill I will use it and deal with the legal complications later."
Well, with all that said, I had no ill side effects. Except that I was sleepy but I think that was from not sleeping enough.
|Blurry Houston Temple|
Last night at the temple was so good. I am pretty emotional these days. Last night was just such a good session. I spent quite a bit of time crying in the celestial room after. I just had this overwhelming feeling that God loves me and that the priesthood blessings given to me and the miracles we have prayed for these last three years are about to be fulfilled. I am so grateful for a loving Heavenly Father.
Well, here we sit, praying for T-cells. Who would have thought that would ever be the center of my prayers but so it is.