Update from the National Cancer Institute- A MUST READ

Hi Friends and Family:

We arrived, and I could write a story already about many many experiences from the 5-lane beltway loop to the laughter, tears and fears, but I'll cut to the chase.

Jim is admitted into the hospital here.

He is NOT accepted into the Trial yet. He needs to have and pass some tests.

I knew they were very interested in Jim's case. That the NP called 3 times in one day and changed the trip, this was good. After some preliminary tests, the Doc team needed to get together and look everything over. There was much abuzz about Jim. Looking at slides, relooking, CT scans viewed over and over. And we waited and waited and waited and no word. I was fearly of coming here, hearing that the answer was no, and us having to drive back to Bob and Shelley's 1.5 hours away, with tears streaming down my eyes in 5 lanes of traffic with people speeding, and a GPS constantly saying, "recalculating, recalculating, recalculating, while I read the mapquest instructions backwards. But they kept him.

They could NOT approve him for 2 reasons.

1. His Creatinine has to be 1.5 or lower. Jim's was 1.52. So, they are running a 24 hour urine collection to get a better reading, which they will happen. I hope it does.

2. They have to make sure that the cancer has not gone into his central nervous system. If it has, he cannot be part of this study. They see "something" on his last MRI that makes them want to retest this. However, the nurse did say that they aren't scared that it has, but that they need to recheck this. I'm praying he passes that, as well.

Why?

Because after telling us why he may not be able to be part of this trial, they then told us why they want him to be able to participate in this trial. 1 gentleman with same DX went into remission for 3 years. 3 other gentlemen with same DX and history are cured. 5 years later, and no evidence of disease.

I will save for another post the emotional ramifications that this had on me.

So, please pray that Jim passes these tests. We will not know anything probably until tomorrow or the next day. I am trying hard not to get excited because after 1.5 yrs of the misDX andfalse hope, etc...I just don't want to go there, but it's hard.

ALSO, if he is NOT eligible for this trial, the docs said that there are other chemo meds that can help, AND that they believe that Jim should have an Allo stem cell transplant. They said he does NOT need to be cancer free here at the NCI, and that Jim has many choices ahead of him. Pretty amazing, considering our plans were to participate in this trial with minimal hope, but some and to go back home and continue to set up the hospice/palliative homecare plan.

I asked why the docs in PGH don't know....they're response is "we are on the cutting edge of..." So. I asked why the Cleveland Clinic didn't know....they asked who we saw, and they know who we saw. In fact, he was trained here. But he left for the big money. And we specifically asked about trials....(even me knowing about this one for months) and the doc knew nothing. One quipped, "that's what happens when you go for the big bucks, boys..." So, I don't know. But like I said, I'm trying to take it one day at a time.

I keep putting everything on the big conveyer belt back up to the sky and giving it over. I'm doing okay.

Thank you for your prayers and support. It means the world for us. Continue to pray for us.

Love Jim and Dolly (Gloria)

PS Free computer in hopt. at Jim's bedside, but will be updating just important info. Thanks.