Well sorry for not posting sooner but we have been pretty busy and when I do have any down time Cody demands that he get it.
Just to touch on a few things that have taken place. On Tuesday morning Cody and I got up for a 8 a.m. appointment. Cody had a MRI w/sedation. I have to note that this was the very best that he has come out of sedation. He was just a little groggy but pretty happy. We waited for a few minutes to talk to the doctor but the nurse came out and said that the doctor couldn't see us so we headed back to the room. As soon as we got back my cell phone rang and it was the nurse. She said that Cody's blood came back and he needed GCSF. That is the booster. Well we headed back up there but Cody didn't complain one bit. When we got there they took use right back to the IV room. The nurse was ready with the meds. Now here is something that I won't count on every time, but we did not expect the GCSF to be administered with a needle but through his accessed port. We didn't put any numbing cream on his leg but he took it without one word of protest. In fact, he told the nurse that it didn't hurt at all. I was so proud of him. When we got back to RM house all Cody wanted to do was play in the play room. This week is a special summer camp going on for the families at RM house. Everyday they do fun things. On this day they planned a trip to the
Yesterday, we had to be there @ 7:45 for his blood test to make sure he didn't eat anything before the test. I thought it was going to be a finger stick but it turned out that they were able to get it from his line. We then went downstairs to nuclear medicine and had his PETscan done. It was after lunch when we got back to the RM house. Chris and Daniela went on a fishing trip with the great people from RM house while we were at the hospital. They had a great time and caught some nice fish.
Today Cody had his MIBG scan at 9:45 and then he had his bone marrow test around 12:30. After that I had a chance to speak with Dr. Modack. He told me that Cody’s MRI from Tuesday came back good. He didn’t have results from any of the other procedures yet. He informed me that if the tests come back as we hope, (NO EVIDENCE OF DISEASE) he will begin the 3f8 w/GMCSF on the second of September. This is what we have been shooting for almost 10 months now. He touched on some of the possible side affects of the new treatment. We will have to start administering the GMCSF while we are on vacation. It is a small price to pay for our week at the beach. The kids are all looking forward to it. Okay, the adults are also.
I can’t sign off without telling you about our little adventure. I will start by saying “learn from my mistakes!” If you take a train up to Penn Station, make sure it is the Penn Station in NY and not NJ. That’s right, there are two Penn Stations and it cost me $85 to find out. Not only is it costly but the cab driver we had was one scary dude. His glasses looked like the bottoms of soda bottles. He had a nervous twitch and seemed to carry on conversations with himself. Chris had the honor of riding in the front seat with him. I rode in the back with Cody and Daniela. I was sitting on the hump and many times I think I felt the car bottom out on the axle. The driver didn’t know how to get around in NY and kept asking other drivers how to get where we wanted to go. One time he did a U-turn in the middle of a street only to find out that it was one way. I had to tell him to turn around. By the time we got to RM house I was pissed, nervous and tired. I was just glad to get out of that cab.
That is it for now. I will post the results of the test as I get them.