Merry almost Christmas! Hope this finds you and yours full of the joy of the season.
Okay, so I said I would get back and let you all know about yesterday's appointment. I will try not to make this as long a report as yesterday's entry, lol.
First let me say that John's transplant has been moved back to mid January. Probably January 16th. This is because they want him to do three additional days of tests. Some of the tests will be on the 26th of December (here locally), some on the 29th of December (in Hershey), and some on January 5th (in Hershey). The 5th will be the worst of the tests. On that day John will have another Bone Marrow Biopsy and his disease will be staged. He won't have the transplant on the 5th, but a biopsy again. I asked him if he wanted me to be in the room. He said yes. So I guess I will do it for him. I will do it for him, because I will do anything for him. I will just turn my head and not look this time.
The nurse coordinator told the oncologist he wanted the transplant to occur as soon as possible after the tests are completed. The nurse coordinator (Todd) is actually the one who sets up the date for the transplant. I heard the nurse coordinator telling another nurse that he had finally gotten the donor to agree to go through with donating for the transplant. This scares me a little as I don't want the donor to change his mind. Please pray everybody that the donor doesn't change his mind.
Todd, the nurse coordinator, said that he would make sure that the Neupogen (that expensive medicine) would be covered by the pharmaceutical company. I still am a little leary, and wonder if later on it will come back to haunt us if we just trust him, but that is what I guess we will have to do. He also said to go ahead and go with the prescription drug plan we had chosen. I wanted him to look over it and make sure, to make sure we hadn't left off any transplant meds, but he was like, "don't worry, just order the plan". I am a little scared to do that also. If I am ordering a plan that does not contain one drug on it, it could be hundreds of dollars again. I don't know why he couldn't have just taken ten minutes and looked at it. He told me we had already discussed it and not to worry. Hope he's right, lol.
Most of yesterday's appointment was spent by John reading and understanding a number of lengthy forms. The most important one was the Consent Form. They gave him a bunch of possible side effects and risks of the chemo and the transplant. He was asked if he wanted to still have the transplant, and he signed on the dotted line. He was told that 50 non-ablative transplants had been done at that transplant center and 7 or 8 people had died. I thought YIKES. He immediately said, "Oh, good, I can risk those odds". I was amazed at what a trooper he was.
We didn't have time to see the psychiatrist or for John to do an Advanced Directive, so those will have to be saved for the 29th. They did have time to draw lots of blood from him though, including doing an HIV test.
OKay, this is about it, since I said I would only give the skinny. Well, real quick, how am I doing? Fairly well.
How is John doing? I am asking him right now: "I am feeling fairly positive right now. I am somewhat concerned about the graft vs. host disease, but I am fairly positive."
We are having a fun time right now doing Christmasy things. Staying positive. Yes, there is stress, but we are staying positive.
Merry Christmas, Love you all lots, Krissy :)